Intellectual Disabilities: Developmental & Mild Intellectual Disabilities
UNDERSTANDING THE PARTNERS IN POLICYMAKING PROGRAM AND WITH DEVELOPMENTAL DISABILITIES ... ·...
Transcript of UNDERSTANDING THE PARTNERS IN POLICYMAKING PROGRAM AND WITH DEVELOPMENTAL DISABILITIES ... ·...
UNDERSTANDING THE PARTNERS IN POLICYMAKING PROGRAM AND
THE IMPACT OF PARTICIPATION ON PARENTS OF CHILDREN
WITH DEVELOPMENTAL DISABILITIES IN MISSOURI
A DISSERTATION IN
Public Affairs and Administration
and
Sociology
Presented to the Faculty of the University
of Missouri-Kansas City in partial fulfillment of
the requirements for the degree
Doctor of Philosophy
by
MICHELLE C. REYNOLDS
Masters of Occupational Therapy, Rockhurst University, 1999
Bachelor of Arts, Rockhurst University, 1996
Kansas City, Missouri
2011
© 2011
MICHELLE C. REYNOLDS
ALL RIGHTS RESERVED
iii
UNDERSTANDING THE PARTNERS IN POLICYMAKING PROGRAM AND
THE IMPACT OF PARTICIPATION ON PARENTS OF CHILDREN
WITH DEVELOPMENTAL DISABILITIES IN MISSOURI
Michelle C. Reynolds, Candidate for the Doctor of Philosophy
University of Missouri-Kansas City, 2011
ABSTRACT
Parents are critical partners in the lives of individuals with developmental disabilities;
however, they often lack an understanding of available resources or they do not know how to
navigate the disability service system to obtain the services they need. Advocacy and
leadership skills along with basic knowledge of best practices can assist individuals with
disabilities and their families in obtaining the services they need while limiting societal and
systematic hurdles which may prevent them from living their lives as fully participating
citizens.
The Partners in Policymaking program, which exists both nationally and
internationally, trains families of children with development disabilities and adults with
disabilities to make changes in their lives and in their communities and ultimately become
integrated citizens. Previous research into the effectiveness of the program has shown
increased advocacy activities of the participants; however, these studies do not seek an
understanding beyond the anticipated outcomes nor identify what features may lead to these
outcomes.
iv
Using grounded theory, a substantive theory is presented to describe program features
and identify outcomes of the Partners in Policymaking program in Missouri. Fourteen
parents of children with developmental disabilities who participated in the program were
selected using theoretical sampling to participate in semi-structured interviews. Inductive
and constant comparison is used to interpret the data until saturation of themes was reached.
Seven themes are presented as the key elements which made the Partners in Policy
program meaningful for the parents which are: (1) being ready, (2) respect, (3) changed
perceptions, (4) membership, (5) understanding possibilities, (6) navigating a future, and (7)
decreased intimidations. These themes impacted parents in such a way that they were
transformed by their participation in the program.
These findings are significant because they provide additional details about the
impact of the Partners in Policymaking program from the perspective of the parents beyond
the results of previous studies. This study will assist in the development of future training
programs and can be used as a foundation to further research on family support. The result
of this study is a substantive theory that concludes that parents “ready” to participate in the
Partners in Policymaking program in Missouri experience a transformation in their
perception about the future for their child with a disability.
v
APPROVAL PAGE
The faculty listed below, appointed by the Dean of Graduate Studies, have examined a
dissertation titled ―Understanding the Partners in Policymaking Program and the Impact of
Participation on Parents of Children with Developmental Disabilities,‖ presented by Michelle
C. Reynolds, candidate for Doctorate of Philosophy degree, and certify it is worthy of
acceptance.
Supervisory Committee
Joan V. Gallos, Ph.D., Committee Chair
Department of Public Affairs & Administration
Linda M. Breytspraak, Ph.D.
Department of Sociology
Patricia J. Kelly, Ph.D.
Department of Nursing
Robert D. Herman, Ph.D.
Department of Public Affairs & Administration
David O. Renz, Ph.D.
Department of Public Affairs & Administration
vi
CONTENTS
Page
ABSTRACT ............................................................................................................................. iii
LIST OF FIGURES ................................................................................................................. ix
LIST OF TABLES .....................................................................................................................x
ACKNOWLEDGEMENTS ..................................................................................................... xi
Chapter
1. INTRODUCTION .................................................................................................................1
Statement of the Problem...................................................................................................1
Purpose of the Study ..........................................................................................................1
Overview............................................................................................................................2
History of Disability ..........................................................................................................3
History of Family-Centered Services and Supports ..........................................................5
Family Systems Theory .....................................................................................7
Resiliency Theory ..............................................................................................8
2. REVIEW OF THE LITERATURE .....................................................................................10
Types of Family Support Services ...................................................................................10
Instrumental Supports ......................................................................................12
Emotional Supports ..........................................................................................15
Informational and Educational Supports .........................................................17
3. EVOLUTION ONF DISABILITY POLICY AND THE PARTNERS IN
POLICYMAKING PROGRAM ..............................................................................................22
Family Support Movement ..............................................................................................22
vii
The Developmental Disabilities Assistance and Bill of Rights Act ................27
Partners in Policymaking Training ..................................................................30
Results of the Partners in Policymaking Program ...........................................33
4. METHODOLOGY ..............................................................................................................37
Rationale for Qualitative Inquiry .....................................................................................37
Symbolic Interactionism Framework ..............................................................................38
Grounded Theory Research Design .................................................................................40
The Researchers Role ......................................................................................................41
Statement of Bias .............................................................................................42
Participants ......................................................................................................................44
Recruitment of Participants .............................................................................................47
Ethical Considerations .....................................................................................................49
Data Collection ................................................................................................................49
Data Analysis ...................................................................................................................50
5. RESULTS ............................................................................................................................58
Being Ready.....................................................................................................................58
Feeling Respected ............................................................................................................59
Changing Perceptions ......................................................................................................60
Finding Membership ........................................................................................................63
Understanding Possibilities .............................................................................................65
Navigating a Future .........................................................................................................66
Decreasing Intimidations .................................................................................................67
Summary ..........................................................................................................................69
viii
6. CONCLUSION ....................................................................................................................70
Discussion ........................................................................................................................70
Conclusion and Recommendations..................................................................................71
Limitations and Future Research .....................................................................................73
REFERENCE LIST .................................................................................................................76
VITA ........................................................................................................................................91
ix
LIST OF FIGURES
Figure Page
1: Framework for Family Support ...........................................................................................12
2: Foundations of the Disability Family Support Movement ..................................................23
3: Progress of the Disability Family Support Movement ........................................................26
x
LIST OF TABLES
Table Page
1: Medical Model vs. Social Construct ......................................................................................5
2: History of Disability: Moving Toward Family Support ........................................................6
3: Instrumental Supports: Day-to-Day Needs ..........................................................................14
4: Emotional Supports: Mental Health and Self-efficacy ........................................................17
5: Informational and Educational Supports: Skills and Knowledge ........................................21
6: DD Act: Goal and Structure.................................................................................................28
7: Evaluation of the Partners in Policymaking Program ..........................................................35
8: Comparison Between Quantitative and Qualitative Inquiry ................................................38
9: Participants in the Partners in Policymaking Program in Missouri ....................................46
10: Representation of the Study Participants by Graduation Year .........................................48
11: Analytical Mapping Model for Development of Substantive Theory ..............................51
12: Codes Identified During Open Coding Analysis ..............................................................52
13: Themes Identified During Selective Coding Analysis .....................................................53
14: Strategies for Checking Accuracy of Findings (Creswell 2009) .......................................57
xi
ACKNOWLEDGEMENTS
Similar to life, writing a dissertation is a journey. A journey requires exploration and
experience before reaching the final destination. For some this journey is short, for others
there are many crossroads and paths that are explored. My journey has been, it started many
years before I even knew that this would be one of my destinations; it started the day my
family opened our home and hearts to a foster child who quickly became my brother. The
joys and realities of growing up as a sibling to Eric, my brother with a disability has shaped
who I am today. Having Eric in my life brings the passion and inspiration for my pursuit to
enhance the quality of life for individuals with disabilities and their families.
This journey has only been possible because of the people that have encouraged and
supported me along the way, especially my family. From the very beginning, my best friend,
my biggest fan, the love of my life, my husband Steve Reynolds, provides the strength and
unwavering support that allows me to pursue and challenge myself both personally and
professionally. I am greatly appreciative for the many selfless hours he fathered, distracted,
and entertained our two children, Preston and Brayden, while I completed this dissertation.
He serves as the ―rock‖ for our children and for our family.
The other two people made it possible for me to be here are my parents Joe and Kathy Kleba,
who provided the foundation for everything in my life. Their unconditional love and
kindness towards each other, for their family, and for everyone that comes into their lives is
something so beautiful it cannot be described in words. I truly admire them as parents and
am grateful for all that they have taught and instilled in me.
I also want to acknowledge how blessed I am to have so many family members and friends
who nurture, encourage and push me my path of life consciously and unconsciously: my twin
brother Jeff and my older brother Joe, Rebecca, Joey, Ethan, Maple, John, Angie and my
many aunts, uncles and cousins. Also for my friends who continuously and graciously ask
and listen to my progress over the years and especially cheered me on near the end; Jennifer
Jedlicka, Pam and Leland Macon, Laura Jackson, Kim and Veto Enna, Shea Wiggins, Angie
and Nathan Goodell.
I would also like to express my appreciation to my committee members and the many
colleagues at UMKC Institute for Human Development who cheered me on along the way;
especially my director, Dr. Carl F. Calkins for his guidance and persistence for me to
discover and explore a role for myself, Dr. Pat Kelly, who was relentless in her pursuit to see
me succeed and Dr. Joan Gallos who pushed me at end to be the best that I can be.
I am extremely indebted to my team members who support me in all of my endeavors and
who have dedicated countless hours to completing tasks that helped me achieve this
xii
accomplishment; Scott Intagliata, Dr. George Gotto, Jane St. John, Jenny Hatfield-Callen,
Rachel Hiles, Vonda Murphy and especially Cori Brown and Katharine Ragon.
I must also acknowledge all the families of children with disabilities and self-advocates,
especially my People First of Missouri family that has my enriched my perspective and most
importantly my life. I am especially indebted to the parents who participated in this study; it
was their honesty and willingness to share about their lives that made this stop on my journey
possible.
Reaching this destination is just the beginning of a lifelong journey of discovery and
exploration to enhance the lives of individuals with developmental disabilities and their
families. I am grateful to everyone that has traveled with me to this point and excited about
where we are headed together in the future.
DEDICATION
For the ―wind beneath my wings,‖ my family----
for my husband, Steve and my two sons, Brayden and Preston,
and
my parents, Joe and Kathy and my brothers, Joe, Jeff and Eric.
This is only possible because of you.
Thank you for all you have given me.
1
CHAPTER 1
INTRODUCTION
Statement of the Problem
Families of adults with developmental disabilities serve as a critical source of care
and support. In 2006, an estimated 4.7 million Americans had intellectual and developmental
disabilities (Larson et al., 2000) and approximately 60% of these individuals lived with
family caregivers (Fujiura, 1998). Family members not only provide day-to-day support but
also play key roles in securing opportunities for persons with developmental disabilities and
assisting in making decisions that reflect the person‘s desires, goals and dreams (Beach
Center on Disability, 2007b; Everson & Zhang, 2000; Neely-Barnes, Graff, Marcenko,
Weber, & Warfield, 2008; O‘Brien, O‘Brien, & Mount, 1997).
Families also play a vital role in identifying, designing and advocating for services
and supports across the lifespan of persons with developmental disabilities. This role is
especially vital as the disability service system evolves and frees itself from its historical
design of providing institutional care to a system that supports self-determination, freedom
and choice for persons with disabilities. In order to ensure that persons with disabilities and
families have a strong voice in this redesign, training programs must exist to develop their
capacity to be informed, educated advocates. It is imperative that we understand the efficacy
and impact of these training programs to ensure ongoing support and to ensure that the needs
of the families are being met.
Purpose of the Study
The Partners in Policymaking is a widely recognized program in the United States
that was created to support families as they build their capacity to serve in this role. Since
2
its inception, both quantitative and qualitative data have proven satisfaction with and positive
outcomes related to visiting legislators, testifying, or writing letters to newspapers. However,
little is known about the impact of the program on the participants beyond these activities
and the aspects of the program that facilitated these changes. My study seeks to understand
the meaning of the experience from the perspective of the participant and to gain a deeper
understanding into what is causing the powerful impact. My research study will serve to
begin to fill this gap by the use of grounded theory to identify the vital aspects of the Partners
program that facilitate change.
Overview
To understand the Partners in Policymaking program, it is important to understand the
context and history of our understanding and response to disability and to families, in
general. The perceptions of society, trends, practices and policies that have evolved over the
years have determined the nature, settings and types of interventions and supports for persons
with disabilities and their families. Amidst this evolution, families have remained the
constant in the lives of persons with disabilities however the needs, strengths and desires of
the family have not always served as the catalyst to the systems and policies that have been
designed and put into practice.
Chapter One provides a historical overview of both the framework used by
professionals to respond to disability and for understanding families raising a child with a
disability, highlighting the origin of family support and the theories that serve as the
foundation for providing family support using a family-centered approach. This chapter lays
the groundwork for understanding the context of when, why and how the Partners in
Policymaking program was developed. It concludes with an overview of the state and
3
federal disability policies, provided chronologically within the context of the family support
movement.
History of Disability
The development of services and supports for individuals with developmental
disabilities and their families has progressed from removing individuals with disabilities
from their families and society and warehousing them in institutions for training and
protection to now empowering individuals with disabilities to work, play and live in the
community as any other citizen (Braddock, 2002). What began as a medical model focused
on a need to fix an individual with a disability, dictated by physicians and strengthened by
the advances in science and medicine (Bazyk, 1989; Larimore, 1993; Turnbull & Turnbull,
1990) has evolved into a model where disability is understood within a social context where
it is the environment that needs to be changed (Marks, 1997). The medical model focused on
individual pathology and attempted to prevent disabilities or to cure people who had them,
viewing disability as a personal tragedy (Johnstone, 1998; Marks, 1997). Services and
supports using this model were designed to fix the person and to make the disability go away.
Research focused on discrete behaviors or syndromes with positivistic, often experimental
designs in controlled environments such as hospitals or clinics (Mary, 1998; Scheerenberger,
1987).
In the mid-twentieth century the model for understanding disability began to be
viewed within a societal context. That is, barriers in society were what needed to be fixed or
changed not individuals (Braddock, 2002; Fougeyrollas & Beauregard, 2001; Oliver, 1990;
Shakespeare, 1997). For example, while a person in a wheelchair was once viewed as not
having the ability to navigate a flight of steps which prevented him or her from entering a
4
building, the focus has shifted to the lack of an accessible entrance as the reason they are
unable to enter.
The social construct view of disability has had a major impact on the way services
and supports are provided to individuals with developmental disabilities and their families.
Goals of programming are now focused on creating meaningful lives for people with
disabilities, as opposed to defining activities to fix or rehabilitate the person. This shift has
also changed the language of the disability field and the delivery of services; persons are no
longer identified using their diagnosis but are recognized as a person first and services are
controlled by the person receiving them as opposed to medical professionals. The social
construct view also changed where services are provided to individuals with disabilities;
services are no longer being provided in controlled medical settings but rather in the
community with non-medical professionals providing care. This paradigm shift brought
about the recognition that parents and caregivers needed services and supports that would
enable them to successfully raise their family member at home. These services and supports
are recognized in the disability field as family supports. Table 1 distinguishes the differences
between the medical model and the social construct model as applied within the disability
field.
5
Table 1
Medical Model vs. Social Construct
Categories Medical Model Social Construct
Focus Fix or cure the individual Adapt or make accommodations to
environment
Locus of Control Dictated by doctors and
professionals
Person with disability and families
make decisions
Emphasis Focused on discrete behaviors and
syndromes
Focuses on creating meaningful
lives and relationships
Interventions Controlled environments, such as
hospitals and institutions
Living in community in homes,
apartments, with families
Providers Medical professionals provided care Direct care staff, personal care
attendants, and family members
provide support
Language Patients or by diagnosis Person first language
History of Family-Centered Services and Supports
The era of deinstitutionalization and the acknowledgement of the rights of individuals
with disabilities (Jacques, 2003) created a positive change to how professionals responded to
disability and the impact it had on families. In the nineteenth century the moral blame for
childhood disability was assigned to the parents (Ferguson, 2002) and in an effort to stop this
cycle, professionals removed the child from the family and society. Then in the early 1900s
attention shifted to how children with disabilities inevitably damaged the family and
professionals focused on treatments that would cure the child (Ferguson, 2002). In the 1950s
professionals began focusing on interventions that would not only fix the child but that would
also assist the mother in overcoming the burden and grief they were experiencing from
having a child with a disability to care for.
6
Then, starting in the 1980s, the field began to acknowledge that families found
strength and joy having a family member with a disability. This new way of thinking was
supported by two complementary but unique models, family systems and resiliency theory.
Both of these models recognized that families should be understood as a system of strength
and resilience. These models became widely recognized and accepted in the field and now
serve as the foundation for policies and practices that support families raising children with
developmental disabilities known as the family-centered approach. This approach to the
delivery of services, built on family systems and resiliency theory, is the foundation for the
delivery of family support in the field today (Antonovsky, 1993; Ferguson, 2002; Parish,
Pomeranz-Essley, Hemp, Rizzolo, & Braddock, 2001; Summers, Behr, & Turnbull, 1989)
and will be used as the framework for my study. Table 2 highlights how our understanding of
families raising children with disabilities has influenced how family support is provided
using a family-centered approach.
Table 2
History of Disability: Moving Toward Family Support
Era Impact of Disability Professional Response Model
Nineteenth
Century
Blame assigned to parents Remove the child from
society
Eugenics
Early
1900s
Child damaged the family Remove from family and
cure the child
Medical Model
1950s Child was burden on the
family
Coping and Adjustment
Theory: Counsel and train
parents; fix the child
Coping and Adjustment
1980s to
current
Child recognized as positive
contributor within resilient
and capable family system,
with strengths and needs
Partner to provide family
support and services to
family and child in natural
environments in
community
Family Systems theory
and Resiliency Theory
formed the foundation
for the family-centered
approach
7
Family Systems Theory
The development of the family-centered approach began with professionals
recognizing the family as a system that could not be separated into parts (Ferguson, 2002;
Maul & Singer, 2009; Summers et al., 2005). Known as a systems framework,
Bonfenbrenner (1979) used a social ecological model that suggests individuals and families
exist within the context of wider relationships- from the micro system of their own families
to the more distal macro system of society. This systems framework explained how
components of a system interact with one another to form a whole, focusing on the
relationships and interdependence of all of the parts. As it relates to the study of families, it
recognizes that families are made up of members that have individual needs as well as needs
of the entire family. This shifts the focus of disability services from focusing primarily on
the child to focusing on the family as a whole system (Turnbull, Turnbull, Erwin, & Soodak,
2006; Bailey et al., 1998).
Specifically, as it relates to disability, the Family Systems Theory provides a
framework for understanding how families function and accommodate across the lifespan to
having a child with a disability. This theory is based on the characteristics of the family as a
single entity, such as family size, form, cultural background, socioeconomic status, and
geographic location (Turnbull et al., 2006). The family is recognized as a whole made up of
subsystems (marital, parental, sibling and extended) which are separated by boundaries of
cohesion and adaptability that define interaction within and outside of the family.
Family systems theory takes into account the interaction of the family characteristics
and subsystems on how the family responds and functions in the area of affection, self-
esteem, spirituality, economics, daily care, socialization, recreation and education. By
8
utilizing a theory that recognizes the characteristics, interactions and needs from the specific
perspective of the family as a system, professionals can match the types of supports and
services needed to support the person with a disability and ultimately support the entire
family (Knox, Parmenter, Atkinson, & Yazbeck, 2000; Mitchell & Winslade, 1997; Turnbull,
Summers, & Brotherson, 1983). This expanded the existing disability service system
framework from only focusing on the needs of the child to also focusing on the parents and
caregivers as a system.
Resiliency Theory
In addition to expanding its focus on all of the family members, the family-centered
approach focused on the strengths and capabilities of the families as opposed to only looking
at the deficits and needs. For many years research evaluated a families‘ ability to function
based on the levels of stress and depression of the parents using a model known as the stress
and coping perspective. (Floyd & Gallagher, 1997; Greenberg, Seltzer, Krauss & Kim, 1997;
Pearlin, 1989; Pruchno, Patrick & Burant, 1996; Risdal & Singer, 2004; Thoits, 1995). This
model focused on the presumed negative impact on family life caused by the burden of care
giving (Crnic, Friedrich, & Greenberg, 1983; Gallimore, Coots, Weisner, Garnier, & Guthrie,
1996). As research into families raising children with disability evolved, research moved
away from the pathological dysfunction of families and began to recognize the resourceful
ways that families adapt and provide care.
This contrasting research suggested that most parents of a child with a developmental
disability demonstrated a pattern of resiliency in their well-being (Costigan, Floyd, Harter, &
McClintock, 1997; Seltzer, Greenberg, & Krauss, 1995) and were able to positively cope and
adapt (Glidden, 1989; Ramey, Krauss & Simeonsson, 1989; Turnbull, Blue-Banning,
9
Turbiville, & Park, 1999). According to McCubbin and McCubbin (1989), families develop
―resiliency or an ability to respond to and eventually adapt to situations and crises
encountered over the family life cycle‖ (p.6). Families are able to develop strengths and
capabilities in order to achieve balance and harmony for optimal family functioning.
The Resiliency Model recognizes that families can function competently and
overcome crises through a process of adaptation (Patterson, 2002). Expanding on the family
stress model developed by Reuben Hill in 1949, McCubbin and McCubbin (1989) proposed
that a family‘s strengths (cohesion, adaptability, family hardiness, family time and routines),
resources, positive appraisal of the situation, and the depth of coping and problem-solving
strategies are all positively related to the family‘s ability to adapt to a situation. For families
that have a child with a disability, this theory recognized their ability to adapt, grow and
respond to hardships or changes and gain harmony and balance in their life.
10
CHAPTER 2
REVIEW OF THE LITERATURE
Types of Family Support Services
Although researchers opinions have been mixed throughout history regarding the
positive and negative impacts of having a child with a disability, there is consensus that
having a child with a disability creates a new and different set of challenges for families
(Affleck, Tennen, & Gershman, 1985; Cho, Singer, & Brenner, 2001; Heller, Miller, &
Factor, 2003; Horwitz, Reinhard, & Howell-White, 1996; Schwartz & Gidron, 2002; Singer,
2002). Families often are faced with emotional, social, physical and economic demands that
they may not have experienced had their child not been diagnosed with a disability
(Gallimore, Weisner, Bernheimer, Guthrie, & Nihira, 1993; Itzhaky & Schwartz, 2000; Mak
& Ho, 2007; McCollum & Hemmeter, 1997). In response to these additional demands,
family support policies and services were designed to strengthen the family unit as they
support their family member with a disability across the lifespan.
Family support is recognized as being inclusive of the entire range of formal and
informal services provided by governmental and nongovernmental entities to support the
entire family to keep their family member with a disability at home (Turnbull & Turnbull,
2000). Family support can consist of such services as respite, financial assistance, case
management, home modifications, behavioral training or after-school programs (Bradley,
1992; Parish, Pomeranz-Essley, & Braddock, 2003). It also acknowledges informal
relationships which consist of accessing spouse/partner, siblings, grandparents, friends,
neighbors, co-workers, and other parents for information, emotional and care giving support
(Thompson et al., 1997; Turnbull & Turnbull, 2000).
11
Family support is designed to empower and meet the needs of families as they serve
in the role of caregiver (Bradley, 1992; Dunst, Trivette, & Deal, 1994; Knoll et al., 1992;
Taylor, Knoll, Lehr, & Walker, 1989; Thompson et al., 1997) and to supplement and in some
cases replace costly state run programs. Family support is also recognized as a strategy to
advance autonomy and self-determination of both the family and ultimately the person with a
disability (Wehmeyer & Palmer, 2000). The overall goal is to provide family support that
leads to better psychological health (less stress, reduced anxiety, less depression) and
increased levels of well-being and life satisfaction of all family members (Ireys, Chernoff,
DeVet, & Young, 2001; King, Teplicky, King, & Rosenbaum, 2004).
Family supports delivered within the family-centered approach increases the families‘
sense of control and ultimately enhances the quality of life for the individual with a disability
and the family as a whole (Bowman & Virtue, 1993; Knox et al., 2000; Summers, McMann,
& Fuger, 1997; Summers et al., 2005; Wheeler, 1996). This is accomplished by recognizing
the family as the constant in the family member with a disabilities‘ life and serves as the
main unit for all planning and intervention. By focusing on the families‘ relationships,
strengths, and perceptions and providing services in a culturally responsive manner the
family is able to adjust to and develop a positive future for all family members (Bradley,
1992; Dunst, Trivette, & Deal, 1988; Friesen & Koroloff, 1990; Johnson, McGonigel, &
Kaufmann, 1989).
To better understand the complexity of family support, the literature identifies three
broad categories for the types of services that are offered to the family: instrumental,
emotional and informational/educational. Instrumental supports are the services needed in the
home to meet the day-to-day demands of caring for the person with a disability. Emotional
12
and informational/educational supports assist the caregiver and family in increasing their
understanding about the disability and strategies for navigating the community services.
These two supports also enhance a families knowledge of how and what is possible when
planning a future for their child and family. Figure 1 describes the framework for family
support through the combination of these three main categories of family support and the
family-centered philosophical approach.
Figure 1: Framework for Family Support
Instrumental Supports
Families indicate it is the day-to-day caregiving needs which require the most support
(Dyson, 1991; Frey, Greenberg, & Fewell., 1989; Friedrich & Friedrich, 1982; Kazak &
Marvin, 1984; Mahoney & O‘Sullivan, 1992). The demands of caregiving are substantially
greater for children with disabilities than for children without disabilities (Erickson &
Upshur, 1989; Harris & McHale, 1989, Mahoney & O‘Sullivan, 1992). These demands
Family Support is a family-centered value-based approach: - driven by the family and family member with ID/DD,
-focuses on the strengths, capacity, and diversity of family, - builds on networks of all family members and community, and
- recognizes the family as a system
Instrumental Supports: Day-to-Day Needs
Emotional Supports: Mental Health and
Self-efficacy
Information and Training Supports:
Knowledge and Skills
13
entail additional time and support needed for feeding, bathing, dressing, as well as
transportation, special equipment, and additional medical care needs (Itzhaky & Schwartz,
2000).
In addition, having a child with a disability can sometimes bring greater financial
instability for families because of additional medical, therapy and support costs (Parish et al.,
2009). In the US, 28% of children with disabilities live below the federal poverty threshold
as compared with 16% of children without disabilities (Emerson, 2007; Fujiura & Yamaki,
2000; Parish et al., 2009). This is often compounded because parents of children with
disabilities have lower rates of and diminished opportunities for employment than parents of
children without disabilities (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001).
Instrumental supports are the most common types of supports to assist the family and
the child with a disability overcome the day-to-day challenges. These can be defined as
concrete services such as respite or child care, community supports, specialized professional
supports and therapies as well as financial assistance and connection to recreational
opportunities (Bailey, Blasco, & Simeonsson, 1992; Bradley, 1992; Friesen & Koroloff,
1990; Singer & Irvin, 1989). These types of supports are designed to reduce the impact of
having a child with a disability on the family in terms of the caregiving and financial
responsibilities
Although empirical studies specific to instrumental supports are limited, positive
outcomes have been identified by some researchers. In one descriptive study, family
caregivers who participated in family support programs in Iowa, Illinois and Michigan
reported positively about the availability of cash vouchers and subsidies, but they
emphasized the need for information, advice and assistance on navigating service systems
14
regardless of resource availability (Agosta, 1992). These outcomes were further supported in
findings from other states where families reported less unmet needs than families who did not
participate in the family support program during the same time period.
In a more recent study conducted over a nine year period, Caldwell, Heller, and
Taylor (2007) found other positive outcomes such as higher satisfaction with services,
increased communication participation and decreased caregiver burden from families that
participated in a consumer-directed program that allowed families to control and direct an
individualized budget. To further describe instrumental supports, longitudinal data has been
collected from every state that provides family support services and compared in the State of
the State in Developmental Disability (Braddock, 2002). This report provides an overview of
service use and cost but it does not provide details on the outcomes of these services. Table
3 highlights the studies found that focus on instrumental supports for families raising
children with disabilities.
Table 3
Instrumental Supports: Day-to-Day Needs
Research Findings
Evaluating family support services: Two
quantitative case studies, Agosta (1992)
Positive response to cash vouchers and
emphasized need for information and advice
on navigation and resources available
Longitudinal outcomes of a consumer-
directed program supporting adults with d.d.
and their families, Caldwell et al, (2007)
Nine year study of 38 families showed
decrease in unmet needs, increase in service
satisfaction, increased community
participation and decreased caregiver burden
State of the State in Developmental
Disabilities, Braddock (2002)
Longitudinal and state comparison data on
service use and cost of elements of family
support
15
Emotional Supports
In addition to the extra day-to-day demands, parents of children with disabilities often
report more parenting stress and mental health problems than parents without children with
disabilities (Beckman, 1991; Dyson, 1991; Emerson, 2003) which is exacerbated by the
isolation and stigma associated with disability (Bradley, 1992). Many families indicate
experiencing a recurring sense of loss of the person whom their child might have become
along with the ongoing fear for what the future may bring for their child (Blacher, Lopez,
Shapiro, & Fusco, 1997; Freedman, Krauss, & Seltzer, 1997; Hassall, Rose, & McDonald,
2005; Lefley, 1996; Turnbull et al., 1993). To cope with these stressors, families often seek
emotional supports to assist them as they adapt to new situations.
Families can meet their emotional needs through formal supports provided by
professionals such as counseling or therapy and informal supports provided by other parents
or peers who are also experiencing raising a child with a disability. In addition,
organizations run by families who have children with disabilities have been established to
provide peer support opportunities in both one-on-one and group situations (Davidson &
Dosser, 1982; Santelli & Marquis, 1993; Santelli, Poyadue, & Young, 2001; Santelli,
Turnbull, Marquis, & Lerner, 1997). Currently, there are more than 2,000 national family
organizations with many of them having state and local groups (Turnbull & Turnbull, 2001).
Whether it has been offered by professionals or family organizations, emotional supports are
beneficial for decreasing the isolation and additional stress that parents may experience
(Bailey et al., 1992, Friesen & Koroloff, 1990; Gartner, Kerzner-Lipsky, & Turnbull, 1991;
Singer et al., 1999; Summers et al., 1989).
16
In a meta-analysis of the effectiveness of group-based parenting programs for
improving maternal psychosocial health, the author found 23 studies from 1970 to July 2000,
which had control trials with an experimental and control group and at least one standardized
instrument (Barlow, Coren, & Stewart-Brown, 2002). Despite some limitations such as lack
of pre-test, the results were positive in that they supported a statistical difference favoring the
intervention group for a decrease in depression and anxiety and an increase in confidence,
self-esteem and relationship with partner. This study provides promising evidence that
emotional support services can have a positive impact on caregivers who are raising children
with disabilities.
These findings are consistent with a study conducted between the years 1989-1993
with responses from over 375 local parent-to-parent programs and 600 parents who requested
parent-to-parent support or parents who served as mentors. Santelli and colleagues (1997)
reported that over 60% of the parents surveyed reported the most important aspects of the
match were the emotional support of sharing an experience with another parent and receiving
information about the specific disability along with receiving strategies for coping with the
day-to-day caregiving needs of the child. Table 4 summarizes the findings of these studies on
emotional supports.
17
Table 4
Emotional Supports: Mental Health and Self-efficacy
Research Findings
Meta-analysis of the effectiveness of parenting
programmes in improving maternal
pyschosocial health.
Barlow, Coren, & Stewart-Brown, 2002
23 studies from 1970 to 2000 with control
trials with experimental and control groups and
one standardized instrument
Found decreased depression and anxiety,
increased confidence, self-esteem and
relationship with partner
Parent-to-Parent programs:
A resource for parents and professionals,
Santelli et al, 1997.
375 local P2P program administrators and 600
referred and veteran parents from 43 of 50
states from 1989 – 1993 participated in survey
60% mention emotional support of sharing
experiences, receiving info about disability and
day-to-day as most important part of match.
Informational and Educational Supports
Informational and educational opportunities for families and individuals with
developmental disabilities are crucial form of family support (Bailey, 2001; Bailey et al.,
1999; Heller, Caldwell, & Factor, 2007). Families often report lack of information or
misinformation as one of the main barriers to supporting their child and their family
(Freedman & Boyer, 2000; Westling, 1996). They often seek information about the
disability itself and the types of interventions, therapies and services available to assist their
child and their family (Bailey, 2001; Bailey et al., 1992).
Families also need to develop skills to assist them in navigating, identifying,
accessing and advocating for needed services within the educational, vocational, housing and
financial planning arenas (Friesen & Koroloff, 1990; Heller et al., 2007). By developing the
capacity of parents and caregivers to solve problems, develop coping strategies and advocacy
skills, families become more independent and have increased levels of self-efficacy (Singer
18
& Irvin, 1989). These crucial skills are charted as outcomes of government services for
families receiving early intervention, child mental health, and educational system services
(Bailey et al., 1998; Mahoney et al., 1999; Turnbull & Turnbull, 1996).
As the field has come to recognize the significant role of families, the focus of parent
education programs has evolved with it. The first educational training programs were
designed to fix parents that had given birth to a child with a disability and then evolved to
helping the parent overcome the tragedy of having a child with a disability. Then training
moved to using the parent as an instrument of intervention. The focus is now on assisting
families to develop the skills and confidence needed to understand their child‘s disability,
navigate the resources available, and to partner with professionals in obtaining services for
their child (Turnbull & Turnbull, 2000).
Although studies focusing on instrumental and emotional supports are limited, a
plethora of educational training program studies can be found in the literature (Singer, 2002).
Schultz et al. (1993) tested the group-based intervention, Caring for Parents Caregivers
program. This multi-component intervention consisted of six weekly sessions focusing on
stress-management, relaxation, problem solving, accessing social support, networking, and
awareness of self and others. Parents were randomly assigned to a treatment and control
group and 12-month evaluation data were analyzed. Results showed significant
improvements in psychological well-being in the treatment group for both mothers and
fathers. The outcomes of this study are encouraging given the strong internal validity of the
study.
Researchers focusing on autism have evaluation programs that focused on parent
education and behavioral changes in the child. Bitsika and Sharpely (2000) described
19
outcomes of an eight week stress management group intervention for parents. Parents
reported positive outcomes related to the group experience and the techniques learned.
Although pre to post self-rated anxiety and depression scales did not significantly change
within the control group, there was a difference compared to the group of parents that did not
participate in the program. In another study, Bristol and colleagues showed parents involved
in a training and education program for their child with autism reported reduced depression
18 months after treatment (Bristol, Gallagher, & Holt 1993). This study highlights how
educational training can show positive changes for parents and the child with a disability.
Numerous studies have shown positive outcomes using parent education based on
self-efficacy. In an experimental study Koegel, Symon and Koegel (2002) evaluated a parent
education program that used motivational techniques that were incorporated into their daily
interactions with their children. The results demonstrated gains during interactions with the
parents compared to the pre test in their home environment. Brookman-Frazee (2004) also
investigated parent education programs but she compared two facilitation models: one
directed by a clinician and one facilitated in partnership with the parent. Parent stress, parent
confidence, child affect, and child responses to engagement were measured using
standardized instruments completed by two researchers that were blind to the experimental
conditions. Mothers in this study were observed to demonstrate lower levels of observed
stress and higher levels of observed confidence during the partnership condition compared to
the clinician directed condition. Children also had a positive response to the partnership
condition compared to the clinician directed condition. Although the small sample size was a
limitation to this study, this research does support the notion that empowering parents to
20
participate in collaborative problem-solving with professionals may relate to parent
confidence and stress.
More recently, researchers have expanded their focus to move beyond decreasing
levels of stress and anxiety for parents to identifying how family support services can impact
the levels of self-efficacy and empowerment of the parent and the child with a disability
(Dempsey & Dunst, 2004; Heller, Miller, & Hsieh, 1999; Wehmeyer, 1992). The literature
defines empowerment as a parent‘s willingness and confidence in learning new skills,
managing life routines, and being active in their child‘s treatment as well as community and
political systems (Heflinger, Bickman, Northrup, & Sonnichsen 1997; Koren, DeChillo, &
Friesen, 1992). Empowerment interventions, such as parent education, shift the locus of
control to the family to enable them to acquire the skills to solve their own problems and
meet their family goals (Jones, Garlow, Turnbull, & Barber, 1996; McDowell & Klepper,
2000).
One such study identifies the empowerment effects of teaching leadership skills to
adults with a severe mental illness and their families. Hess and colleagues (2001) trained 160
participants in five different training sessions. The responses from the participants over a
two-year survey indicated that training supported collective advocacy activities beyond the
time of the project. Although this study focuses on a different target group it is very similar
to the Partners in Policymaking program and the findings support the positive impact that
both of these program can make in terms of political advocacy. Table 5 summarizes the
studies regarding the impact of information and educational supports.
21
Table 5
Information and Educational Supports: Skills and Knowledge
Research Design Findings
Psych Pychoeducational supports for
parents of children with
intellectual disability: An
outcome study.
Schultz et al (1993).
Random Control trial of multi-
component group-based
intervention.
Improvements in
psychological well-being
The effectiveness of parent
management training to
increase self-efficacy in parents
of children with Aspergers
syndrome. Sofronoff and
Farbotko (2002)
Random Control Trial ; 45
mothers and 44 fathers
participated in training with pre
and post tests
Decreased in problem
behaviors in child compared
to control group and
increase in self-efficacy of
parents overall
Collateral effects of behavioral
parent training on families of
children with d.d. and behavior
disorders.
Feldman and Werner (2002)
Quasi-experimental ; survey of
18 families participated in
behavioral parent training five
years post discharge
Decrease in child behavior
problems, and family stress
and increase in quality of
life and self-efficacy
Empowerment Effects of
Teaching Leadership Skills to
Adults with a Severe Mental
Illness and Their Families.
Hess, Clapperm Hoekstra, and
Gibison (2001)
Descriptive; 160 Academy
Participants (92 with consumers
and 68 family members)
surveyed over a two-year
period of 5 Academy Training
sessions
Positive qualitative
outcomes that support
collective advocacy action
of participants beyond scope
of project
Autism: Pivotal response
intervention and parental
empowerment. Koegel,
Symon, and Koegel (2002)
Experimental; 10 children and
their families participated in a
multi-phase intervention
Gains during interactions
with the parents compared
to the pre test in their home
environment
Using parent/clinician
partnerships in parent education
programs for children with
autism. Brookman-Frazee
(2004)
Experimental; 3 boys and their
mothers participated in this
study measured using
standardized instruments
completed by two researchers
that were blind to the
experimental conditions
Mothers demonstrated
lower levels of observed
stress and higher levels of
observed confidence during
the partnership condition
compared to the clinician
directed condition.
Children also had a positive
response to the partnership
condition compared to the
clinician directed condition
22
CHAPTER 3:
EVOLUTION OF DISABILITY POLICY AND THE PARTNERS IN POLICYMAKING
PROGRAM
Family Support Movement
The origin of the family support movement in the disability field is rooted in the
United States larger societal context and events of the 1950s. As the war was ending, the
country began to prosper. Women were working outside of the home, families were buying
homes, medicine was improving and the economy started to boom. At the same time, the
civil rights movement was starting where citizens were demanding equal rights and standards
across the country. These political, economic and societal factors set the stage for what is
recognized as the family support movement.
The larger social service family support movement began with the general social
services movement in the 1960s, with self-help and grassroots efforts advocating for the
development of community-based programs and supports to strengthen family functioning
(Dunst, Johanson, Trivette, & Hamby 1991; Weissbourd, 1987; Weissbourd & Kagan, 1989;
Zigler & Black, 1989). This movement focused on families in particular social or economic
categories; such as poverty, joblessness, poor health, or other factors (Kagan & Weissbourd,
1994). The family support movement evolved to adjust to the changing composition and
needs of families.
During this same time, the parent movement in the disability field was gaining
strength and momentum. Parents organized to support each other and to speak out for their
sons and daughters with disabilities (Braddock, 2002). Families strongly supported the idea
that their child was not broken and did not need to be removed from their home to be fixed
23
(Bazyk, 1989; Cournoyer, 1991; Dunst et al., 1988; Turnbull & Turnbull, 1990). These
parent groups were the first to bring disability issues of segregation, lack of education and
training, and lack of support services to legislators, educators and the public (Goode, 1999).
The parents highlighted the need to create a system of support that would enable their sons
and daughters to go to school and receive the services necessary to continue living as a
family. Figure 2 highlights the context for the development of the family support movement.
Figure 2: Foundations of the Disability Family Support Movement
This momentum created the first recognized disability family support movement.
Families began identifying and campaigning for the development of programs that would
support their child within community schools and the disability service system resulting in
considerable progress in public policy for individuals with disabilities (Silverstein, 2000).
These included the passage of Title XIX of the Social Security Act (Medicaid) which funded
intermediate care facilities as opposed to funding only institutions; the ruling in the Wyatt v.
Stickney case that found that individuals with disabilities had a constitutional right to
treatment; passage of Section 504 of the Rehabilitation Act which protected individuals with
disabilities against discrimination; and the landmark passage of the Education of All
Handicapped Children Act (now known as IDEA). Also, during this time the Developmental
Disabilities Services and Facilities Construction Amendments of 1970, P.L. 517 was passed,
the first congressional effort to address the needs of a group of individuals with
End of World War II
Beginning of Civil Rights
Movement
Focus on strengthening families in the community in social service programs
Parents of children with disabilities began organizing
24
disabilities designated as developmentally disabled. This Act would later become the
Developmental Disabilities Act (DD Act). These new policies laid the foundation allowing
parents to care for their child at home and in their communities.
State governments establishing policies and programs to support and strengthen
families of young children (Weiss, 1989) represent the next wave of the family support
movement. States recognized that families needed assistance to support their child at home.
In the early 1970‘s Pennsylvania developed one of the earliest state-funded family support
initiatives for children with intellectual disabilities. Over the next two decades, all other
states and the District of Columbia fielded some type of family support for children, each
offering different types of services and supports intended to do ―whatever it takes‖ to assure
that children could grow up with their families (Daniels, Butz, Goodman, & Kregel , 2009).
The following table summarizes the third wave of disability family support.
Federal legislation soon followed, representing a third wave of family support that
refocused federal departments and initiatives on family-oriented and community based
programs. Early intervention Special Education legislation (IDEA Part C) passed in 1986
that mandated states develop systems that utilize individual family service plans to integrate
health, education and social service systems. Part C recognizes that the ―family is the most
important constant in a child‘s life and the family environment is the richest context for
social, emotional, cognitive and physical development‖ (Hooper & Umansky, 2004, p. 92).
IDEA reauthorization also indicated parents were to be viewed not only as recipients of
services but as the accountability mechanism to monitor professionals as they implemented
IDEA requirements (Turnbull & Turnbull, 2000; Turnbull, Turnbull, & Wheat, 1982). The
same year the Developmental Disabilities Act mandated its funded entities to develop a
25
meaningful role for families in the provision of services and policies. This significant
mandate is the impetus to the development of the Partners in Policymaking program and is
described below in greater detail. Then, the Department of Health and Human Services-
Division of Maternal and Child Health, soon following in 1989, adopted the philosophy that
services for children with special health care needs should be family-centered, community-
based, coordinated, comprehensive, and culturally competent with passage of P.L. 101-239
Omnibus Budget Reconciliation Act. (Brewer, McPherson, Magrab, & Hutchins, 1989;
Hutchins & McPherson, 1991; Shelton, Jeppson, & Johnson, 1987). These federal policies
represented the transformations that were occurring across the country related to family
support and to the recognition and rights of families. Figure 3 shows the progress of
disability family support in public policy.
26
Figure 3: Progress of the Disability Family Support Policy
•Medicaid began funding intermediate care facilities
•Rehab Act, Section 504 protected individuals with disabilities against discrimination
•Education of All Handicapped Children (IDEA)
•Developmental Disabilities Services and Facilities Construction
First Wave of Disability Family Support: Parent
Movement and Developmental Disability
Services 1950s-1970s
•1970s Pennsylvania developed earliest state-funded family support program
•Over the next two decades, all states offered some type of family support program
Second Wave of Disability Family Support: Family
Support and State Government 1970s-1980s
•Individuals with Disabilities Act
•Early Intervention Special Education (Part C): Family support plans developed
•Parents accountability Mechanism
•Developmental Disabilities Act
•1986: Meaningful participation of individuals with disabilities and families in provision of services and policies
•Omnibus Budget Reconciliation Act
•Department of Health & Human Services, Division of Maternal & Child Health adopted family-centered and community-based services
Third Wave of Disability Family Support: Family
Support and Federal Policy 1980s-Current
27
The Developmental Disabilities Assistance and Bill of Rights Act
The Developmental Disabilities Assistance and Bill of Rights Act (DD Act),
originally titled the Developmental Disabilities Services and Facilities Construction
Amendments of 1970, P.L. 517, was the first federal legislation specific to developing
services for persons with developmental disabilities, with its original focus on the
development of facilities and programs. However, by 1986, the DD Act had evolved along
with our understanding of disability, to recognizing the significant role that families play in
the everyday support for individuals with disabilities and in the development of policies that
most impacts their lives and services. The following section will highlight how the concept
of family support threads throughout this federal legislation and how the DD Act served as
the impetus to the development of the Partners in Policymaking program.
The DD Act is designed to assure that individuals with developmental disabilities and
their families participate in the design of and have access to culturally competent services,
supports, and other assistance and opportunities that promote independence, productivity,
integration, and inclusion into the community. The Administration of Developmental
Disabilities serves as the federal agency that oversees the DD Acts implementation. The
goals of the DD Act are accomplished through funding provided to four distinct but
integrated entities in almost every state and territory; Councils on Developmental
Disabilities, Protection and Advocacy Services, University Centers on Excellence in
Developmental Disabilities, and Projects of National Significance. Table 6 describes the
overall goal and structure of the DD Act.
28
Table 6
DD Act: Goal and Structure
Goal: Assure that individuals with developmental disabilities and their families participate
in design of and have access to culturally competent services, supports and other assistance
and opportunities that promote independence, productivity, integration and inclusion into
the community.
University Centers on Excellence Interdisciplinary training for students and
professionals, cutting edge research, technical
assistance and direct services and supports
Protection and Advocacy Services Protect legal and human rights of individuals
with disabilities through legal and
administrative means
Developmental Disabilities Councils Develop innovative and cost effective
strategies to promote systems change in states
Projects of National Significance Support local and state projects that can be
replicated across the country
The DD Act identifies Councils on Developmental Disabilities in each state and
charges them with developing innovative and cost effective strategies to promote systemic
change. The role of Protection and Advocacy Systems are to protect the legal and human
rights of individuals with developmental disabilities through legal, administrative and other
appropriate remedies. University Centers for Excellence in Developmental Disabilities
(UCEDDs) provide interdisciplinary training to students and professionals, engage in cutting-
edge research, provide technical assistance, and direct services and supports to individuals
with disabilities and their families. While Projects of National Significance support local and
state projects which address emerging areas of concern that can be replicated across the
nation. Each of these entities also identifies strategies for coordinating activities that would
accomplish the overall goals of the DD Act, such as joint demonstration projects, shared
information dissemination strategies or collaborative systems change initiatives.
29
With each reauthorization of the DD Act, the role of the family and individuals with
developmental disabilities has grown in significance. Beginning in 1986 the reauthorization
language was amended to recognize and mandate the role of parents and family members in
the provision of services and policies for those with developmental disabilities. This
amendment required that programs develop and implement meaningful participation and
training for parents and family members. This is accomplished using a myriad of strategies;
such as hiring family members and self-advocates in key roles, developing community
advisory boards with family and self-advocate leaders from the state and infusing family-
leaders into interdisciplinary training opportunities.
In 2002 the DD Act was again reauthorized, this time it wasn‘t just the role of
families but the concept of family support overall that was elevated within the Act as Title II:
Family Support. Family support was now explicitly recognized as an area of need and focus
for research, education and services however no funding was appropriated (Beach Center on
Disability, 2007a; Daniels et al., 2009). In response to this, the Administration on
Developmental Disabilities used funding from the Projects of National Significance program
to develop family support initiatives for individuals with developmental disabilities and their
families (Knoll et al., 1990). These initiatives were designed to emphasize the important role
of family and community members in the lives of individuals with disabilities with the
provision of necessary support services (US Senate Report 100-113, 1987).
Although funding continues for several projects across the country, professionals
within the field recognize the need to develop an integrated, cohesive system of support for
families that moves beyond what the past projects have focused on. Currently however the
Administration on Developmental Disabilities is engaging stakeholders in conversations to
30
facilitate the development of a national agenda and policy recommendations to further
elevate the importance of and funding for family support. This is especially important as
families are demanding services in the community, as opposed to segregated services in the
community and as fiscal constraints are changing the scope and nature of services provided.
Partners in Policymaking Training Program
In response to the federal DD Act and the increased role of families it mandated, the
Minnesota Governor‘s Council for Developmental Disabilities recognized that parents of
children with developmental disabilities needed specific information and skills to participate.
Their response was to create the groundbreaking training program called Partners in
Policymaking® to empower individuals with developmental disabilities and their families in
obtaining the most appropriate supports and services for themselves and others (Kaliszewski
& Wieck, 1987) and to assist them to become involved in the public policy arena (Wieck &
Skarnulis, 1987). The mission of the program is to ―provide information, training, resources
and skill building in the area of developmental disabilities to families of young children with
disabilities and to consumers with disabilities‖ (Zirpoli, Wieck, Hancox, & Skarnulis, 1994,
p. 423). Participants are exposed to leading national figures in the areas of policy, research,
and services for individuals with developmental disabilities (Balcazar, Keys, Bertram, &
Rizzo, 1996) and are connected with policymaking and legislative advocacy opportunities
(Kaliszewski & Wieck, 1987). The program also educates participants about current issues
and state-of-the-art approaches to community services and supports.
According to the Minnesota Governor‘s Council, since 1987 over 15,000 people have
graduated from the Partners program representing over 46 states, two US territories, the
Netherlands and the United Kingdom. Specifically in Missouri, the Missouri Council for
31
Developmental Disabilities has been hosting the Partners in Policymaking training program.
Two hundred and ninety-nine participants have graduated from the program over the last 16
years.
Partners in Policymaking is an advocacy training program recognized internationally
in the field of developmental disabilities by self-advocates, disability professionals and
policymakers (Wang, Mannan, Poston, Turnbull, & Summers, 2004). The creators of the
Partners program recognized the need to protect the integrity of the program as it quickly
expanded into other states for implementation. To ensure the quality of the program, the
Minnesota Governor‘s Council filed a trademark application in 1997 and received approval
in December, 1999. This is significant to ensure the quality of the programs being
implemented by other states and it also creates a standard for which to evaluate the program.
The Trademark application (1997) states:
―leadership training programs that bear the name Partners in Policymaking are
expected to be a certain type of leadership program:
Value based;
Competency based;
Teaches leadership skills, best practices, and how to influence public
policy at all levels of government; conducted over eight, two-day
weekends;
Includes at least 1128 hours of training;
Covers specific topic areas;
Utilizes the expertise and experience of presenters with a national (as
opposed to local) perspective and knowledge of best practices in the topic
areas;
Involves readings, homework, and a public policy project;
Regularly updated and improved.
A comprehensive curriculum has been designed to meet the intended purposes of the
Partners program and is updated to reflect current and best practices in the field of
32
disabilities. As stated in the curriculum, successful completion of the program will give
Partners graduates these competencies:
Describe the history of services for, and perceptions of, individuals with
developmental disabilities.
Describe significant contributions of the parents' movement.
Describe the history of the self advocacy and independent living movements.
Describe the benefits and values supporting inclusion and quality education
for students with and without disabilities.
Outline specific strategies to achieve inclusion and quality education.
Demonstrate knowledge of the service coordination system and what services
may be available.
Describe the importance of futures planning and self determination for
individuals with developmental disabilities.
Understand the principles of choice and control of resources in futures
planning.
Understand the reasons for and the importance of proper positioning
techniques for individuals with disabilities.
Describe examples of state-of-the-art technologies for people with severe
disabilities.
Describe the importance of supported, competitive employment opportunities.
Understand that a flexible, responsive system of supports for the families of
children with disabilities is the corner stone for a true system of community
supports for individuals with developmental disabilities.
Understand the need for all individuals to experience changes in lifestyle
across the life span.
Know/understand the importance of home ownership/control as one of the
defining characteristics of adult life in our culture.
Understand the basic principles and strategies being used to support
individuals with developmental disabilities in their own homes across the life
span.
Create a vision for the year 2020 (and beyond) for individuals with
disabilities.
Understand how a bill becomes a law at the state and federal levels.
Identify critical federal issues and the process by which they can personally
address their concerns.
Demonstrate successful techniques for advocating for services to meet the
needs of unserved and underserved individuals.
Draft and deliver testimony for legislative hearings.
Learn how to meet a public official and discuss issues.
Identify strategies for beginning and sustaining grassroots level organizing.
Understand the role of when and how to use the media to effectively promote
their issues.
33
Demonstrate proper procedures for conducting a meeting.
Gain a basic understanding of parliamentary procedure and serving on boards.
Results of the Partners in Policymaking Program
The growth and expansion of the program is an indication of both the need and the
anticipated positive advocacy efforts expected after graduation. Since the program‘s
inception, the founders and other program implementers have collected both qualitative and
quantitative demographic information on all participants including evaluations of each topic
and post-evaluation reports outlining the types of advocacy activities in which the graduates
participated. In addition, anecdotal comments were collected about their advocacy efforts
from the participants.
After the first year of the program, Zirpoli, Hancox, Wieck, and Skarnulis (1989)
reported on the responses of the 35 participants six months after participation. They reported
that 57% of the participants had improved their self-advocacy skills, 89% obtained
appropriate services for themselves or family member, and 82% felt prepared to be effective
advocates. Data was also collected on the advocacy after graduation with over 68.6% having
contacted a local, state and national official by phone, letters or office visits; 80% were
serving on boards or committees; and more than 28% had presented to parent groups,
conferences or published a letter.
The findings from the first year were supported by a follow-up study that looked at
the first five years of the program (Ziripoli et al., 1994). Surveys were mailed to the 163
participants with 130 surveys completed and returned. The results indicated that participants
were satisfied and that they had similar levels of improvement of self-advocacy skills (57%
reported excellent) and ability to secure services as a result of participation (62% indicated
34
definitely yes). The level of advocacy after graduation was also similar to findings in the
first report; 62% had contact with local, state or national official and at least 59% had contact
by letter, mail or phone since graduation.
Findings were further supported by a study conducted in Iowa following the
implementation of the Partners in Policymaking program there (Conconan-Lahr &
Brotherson, 1996). Data was collected using three methods: (a) by a mailed survey from 43
of the 64 participants from 1990 to 1993, (b) 17 semi-structured telephone interviews and (c)
two interactive focus groups. This study also identified supports and barriers for advocacy
action as reported by the participants.
In addition to articles in academic, peer-reviewed journals several states contracted
third party evaluators to develop findings to share with their funding sources or their boards
to justify the continuation of their programs and to ensure that the programs were meeting
their stated goals. Kate Toms and Associates (1997) reported on the New York Partners in
Policymaking Program from 1990 to 1996 and Systemwide Solutions, Inc. (2004) used an
action research approach to evaluate six years of Partners hosted in South Carolina from
1997-2003. Both reports used a mixed methodology of quantitative and qualitative surveys,
interviews, and focus groups. Both reports confirmed participants‘ satisfaction with the
program along with confirmation of participants actively engaging in advocacy activities.
Table 7 summarizes findings from studies on the Partners in Policymaking program.
35
Table 7
Evaluation of the Partners in Policymaking Program
Partners in Policymaking
Minnesota: Year One
Ziropoli et al. (1989)
35 participants in six month survey reported:
-57% improved self-advocacy skills
-89% obtained services for self or family
-68% contacted policy officials
Minnesota: First Five Years
Ziropoli et al. (1994)
130 participants surveyed reported:
-57% improved self-advocacy skills
-62% obtained services for self or family
-62% contacted policy officials
Iowa: 1990 – 1993
Conconan-Lahr et al. (1996)
Mixed methods (mailed survey, semi-
structured interviews, and focus groups) found:
-Satisfaction with program
-Increase participation in advocacy activities New York: 1990 - 1996
Kate Toms and Asst. (1997)
The strength of the evaluation studies of the Partners in Policymaking program is the
consistent longitudinal data that supports the findings of an increase in advocacy actions on
the part of the participants after graduation, which is the expressed mission of the program.
This data can be found dating back to the first class of the Minnesota program and can also
be compared to the many states that have followed the same format and curriculum. Studies
also indicate there are limitations to these findings such as lack of diversity of participants
(Conconan-Lahr & Brotherson, 1996; Zirpoli et al., 1989), lack of baseline data on
participants (Zirpoli et al., 1989) and lack of control group to rule out other causes of
advocacy efforts (Balcazar, Garate-Serafini, & Keys, 1999). However, despite these
limitations, the Partners in Policymaking program continues across the world today and
serves as the most recognized training program in the developmental disability community.
36
Despite identified limitations, such as lack of diversity of participants (Conconan-
Lahr & Brotherson, 1996; Zirpoli et al., 1989), lack of baseline data on participants (Zirpoli
et al., 1989) and lack of control group (Balcazar, Garate-Serafini, & Keys, 1999), numerous
and consistent findings all conclude that the program increases participants advocacy actions
and ability to obtain services for self or family. As is evident with these findings, this
program results in positive satisfaction and outcomes for the participants, however few
studies exist that explore additional outcomes and the specific factors that cause these
changes. My study seeks to identify this information.
37
CHAPTER 4
METHODOLOGY
Rationale for Qualitative Inquiry
For this study, I use a qualitative research method to gain a deeper understanding of
the impact of the Partners in Policymaking program on the parents that attended. By utilizing
qualitative research methods I am able to explore and understand the meaning individuals or
groups ascribe to a social or human problem, as opposed to the emphasis of a quantitative
approach on the measurement and analysis of causal relationships between variables, not
processes (Creswell, 2009; Denzin & Lincoln, 2003). Qualitative methods enable me to
collect, analyze and interpret rich and descriptive data from the perspective of the participant,
the parents who participated in the program.
Specifically, the grounded theory of Corbin and Strauss (2008) serves as the
foundational qualitative approach for my study. This approach is used to generate a
substantive-level theory of the impact of the experience of participating in the Partners in
Policymaking program on the individual. Grounded theory is recognized as a means for
providing a systematic approach to theory development; describing specific methods for
sampling, study procedures and data analysis (Bryant & Charmaz, 2007; Creswell, 1998;
Patton, 2002; Strauss & Corbin, 1998). Table 8 demonstrates the differences between
quantitative and qualitative inquire, specifically highlighting grounded theory.
38
Table 8
Comparison Between Quantitative and Qualitative Inquiry
Quantitative Inquiry Qualitative Inquiry: Grounded Theory
Measure and analyze causal relationships
between variables
Explore and understand meaning individuals or
groups ascribe to a social or human problem
Deductive methods:
-identify theory
-develop hypothesis
-collect data
-analyze data using statistical methods
-prove/disprove hypothesis
Inductive methods:
-identify social or human problem
-collect data
-analyze using constant comparison
-develop categories
-formulate substantive or formal theory
Random sampling from representative
population
Theoretical and purposeful sampling
Measure and analyze causal relationships
between variables
Trustworthiness, authenticity, credibility, rigor,
transparency
Symbolic Interactionism Framework
In qualitative research, a theoretical lens is described as an overall orienting lens or
perspective for the study of questions of gender, class, and race or other issues of
marginalized groups (Creswell, 2009). Since the focus of my study is on a program that
seeks to empower and enhance the advocacy skills of a group of parents raising children with
disabilities that are often disenfranchised from society, I feel it is important to identify a
methodological theoretical lens that has the same goal and intent. For this study, I am using
the symbolic interactionism, which focuses on the social interaction of actual people in the
social world (Blumer, 1969). This perspective shapes the data collection, analysis and
dissemination. Using symbolic interactionism, my hope is that the results are reflective of
the voice of the participants and that they will be used as a call for action or change.
39
Similar to our evolution, symbolic interactionism theory is concerned with the
constant changing and adjusting between the self and the social world. For symbolic
interactionists the self is not fixed and inflexible but constantly adjusting to others.
Individuals perceive themselves in terms of how others perceive them during interactions and
in terms of the roles they play in society. Through these interactions, the interpretation of
symbols, and the filtering process of the mind, the meaning of the world and self is acquired
(Plummer, 2000). This theory enables, researchers to interpret and evaluate human
interactions using methods that allow interaction between and among the participants in order
to observe the behavior in naturalistic settings (Creswell, 1998).
Individuals with disabilities and their families have been adjusting and re-organizing
the perception and role of individuals with disabilities in society since the beginning. This
evolution is recognized in the delivery of services and in societies understanding and
perceptions of individuals. Goals of programming are now focused on creating real
meaningful roles for people as opposed to defining activities to fix or rehabilitate a person.
Examples of meaningful roles include making friends, getting jobs, becoming a member of a
church or participating in recreational activities as opposed to the more common historic goal
of helping a person overcome any limitations of their disability.
The interaction of the societal perception of individuals with disabilities and the role
they have in society is impacting current programs and policies. Concurrently, individuals
with disabilities are being supported to have meaningful, productive roles while at the same
time society is recognizing the rights and value of individuals with disabilities in our
community. As individuals with disabilities become recognized as neighbors, peers,
40
colleagues and spouses, policies and programs will continue to adapt to this new perception
and meet the new support needs of the individual.
Using symbolic interactionism, I sought to understand the impact and the meaning of
participation in Partners in Policymaking from the perspective of the individual as opposed to
merely explaining the experience from a more collective experience. Through in-depth
interviews, I asked the participant not to just explain how they felt about the course but rather
to discuss the meaning of the interaction and experience for themselves and those that they
have contact with such as their child, their families, and community organizations. This
approach allowed me to investigate how the Partners experience influenced their perceptions
and meaning of ―disability‖ and how that new meaning will change their interactions in the
future.
Grounded Theory Research Design
Grounded theory is a strategy of inquiry in which the researcher derives a general,
abstract theory of a process, action, or interaction grounded in the views of participants
(Creswell, 2009; Glaser & Strauss, 1967; Strauss & Corbin, 1998). Strauss and Corbin
(1994) describe grounded theory as ―a general methodology, a way of thinking about and
conceptualizing data‖ (p. 275). Grounded theory studies people in their natural settings,
attempting to understand phenomena in terms of the meanings people bring to them (Denzin
& Lincoln, 2007). Data is collected using theoretical sampling and analyzed throughout
collection using a systematic approach of constant comparison which leads to the formation
of categories which are interrelated to form a substantive or formal theory (Charmaz, 2006;
Charmaz & Henwood, 2007; Corbin & Strauss, 1990, Creswell, 2009; Strauss & Corbin,
1998).
41
Grounded theory attempts to move beyond description to a deeper understanding of
the process. Glaser and Strauss (1967) explained that theory ―discovered through data could
be more relevant and productive since it would at least fit the immediate problems being
investigated‖ (p. 172-173). As opposed to starting with a hypothesis, grounded theory allows
the data to drive the findings. It uses an inductive method defined as ―a type of reasoning
that begins with study of a range of individual cases and extrapolates from them to form a
conceptual category‖ (Charmaz, 2006, p. 188). It moves from specific accounts that are
descriptive and detailed to a more general, abstract, conceptual level.
Grounded theory methodology results in a substantive theory which may or may not
result in the formation of a formal theory. Substantive theory is specific to a group or place
and it does not have broad social applicability. Formal theory, consequently, is not specific
to a group or place; instead it applies to a wide range of concerns and problems across
situational contexts (Strauss & Corbin 1998). The purpose of my study is to establish a
substantive theory specific to Missouri Partners in Policymaking program.
The Researchers Role
One of the distinctive differences between quantitative research and qualitative
research is the role of objectivity. In quantitative research, the researcher uses standardized
instruments and tools to collect data, which are interpreted using statistical analysis in an
attempt to keep the data and results as objective and unbiased as possible. In qualitative
research and especially grounded theory, the researcher is part of the process and serves as a
tool for inquiry. Researchers are the translators of another‘s words and actions; they are the
go-betweens for the participants and the audiences that they want to reach.
42
In qualitative research, sensitivity as opposed to objectivity is the important element
of methodology and analysis. Sensitivity is a researcher‘s ability to understand and present
the view of the participants; based on the researchers insight, experience and comparison
back and forth from data collection and analysis (Corbin & Strauss, 2008). The researchers‘
bias, knowledge, training, perspectives and research paradigms are woven into the research
process (Guba &Lincoln, 1989).
In grounded theory specifically, the researcher and participants interact and co-
construct the research together (Finlay, 2002). Because of this interpretive nature, it is
important for a researcher to identify their biases, values, background, history, culture or any
other factor which may influence or shape the findings. The experience of whoever is
engaged in inquiry is vital to the inquiry and its implicated thought processes.
Statement of Bias
Because of the nature of the grounded theory methodology, it is important that the
researcher share her perspective and experience so that the reader is able to understand what
might frame the results. My research into families living with children with disabilities
began at a very early age, it began the day my family adopted my little brother, Eric. He was
thirteen months old when he came into our lives, but at birth his diagnosis was a genetic pre-
disposition to cognitive and developmental disabilities that were exasperated by
environmental conditions as an infant.
As a sibling, I was able to experience the day-to-day joys and struggles that families
face, along with the role of navigating the services for individuals with disabilities. Growing
up, I attended individual education planning meetings for Eric as he transitioned year-to-year
through the special education school system. During this time, I was experiencing firsthand
43
the hoops, barriers and frustrations that families feel as they attempt to understand and
advocate for what they feel is best for their child. As he got older, I continued and still do
attend planning meetings to discuss how to build the kind of life Eric wanted and deserved
and how the service system could support him and my family to help him achieve this.
Throughout the years, Eric (and my family) has experienced many different
opportunities, placements and services in an attempt to find the supports that provide for a
successful and happy quality of life. This is something that will never stop. As a family, we
will continue to need to adjust, accommodate and identify new strategies for supporting Eric
as he changes, the environment changes and the supports that are available change.
The daily and lifelong experience of identifying supports for Eric and providing on-
going emotional and problem-solving support for my parents serves as the foundation for
what I have done in my professional career. As I was completing my Masters in
Occupational Therapy from Rockhurst University, I began working as a graduate student at
the University of Missouri-Kansas City Institute for Human Development, University Center
on Excellence in Developmental Disabilities. Currently, and throughout the process of
starting and completing my doctoral work, I serve in the role of Director of Individual
Advocacy and Family Support.
In this role, I am able to engage with self-advocates (adults with disabilities) and
families to identify, develop and disseminate strategies for enhancing the lives of individuals
with disabilities and their families. Specifically this occurs with two major initiatives, People
First of Missouri (PFMO) and the Missouri Developmental Disabilities Resource Center
(MODDRC). I have provided on-going technical assistance for the last twelve years to the
statewide self-advocacy organization that is comprised of over 1,000 self-advocates. I spent
44
countless hours learning from, socializing with and advocating alongside strong adult leaders
with developmental disabilities. This experience provided me a glimpse into the realities of
growing up with a disability in the U.S. today.
As the director of the MODDRC, I have been responsible for enhancing and
expanding the role of a statewide information and referral network, which includes the
parent-to-parent service. The goal of this initiative is to provide the information and
emotional support that self-advocates and families need to give them hope and help them
achieve the lives they desire. This role exposes me to local, state and national opportunities
for collaborating with families, disability professionals, researchers and policymakers.
Both of these initiatives provide opportunities for engaging with the Partners in
Policymaking administrative organization and the Missouri Planning Council on
Developmental Disabilities (MPC). The MPC is one of UMKC-IHD‘s network partners, as
identified by the DD Act, which provides many opportunities for joint collaboration on
initiatives and systems-change efforts. In addition, the MPC provides funding to support
the work of the PFMO and of the MODDRC.
I also have frequent contact with many of the Partners in Policymaking graduates,
since many of them become members of the MODDRC Leadership network or they are
members of People First of Missouri. I believe that my personal and professional experience
in the disability field not only serves as a tool for interpretation but also opens access to
organizations and other families that might not be as readily available.
Participants
Qualitative research uses purposeful sampling for gathering data to help the
researcher understand the issue which is fundamentally different than the more readily
45
recognized practice and assumptions of quantitative sampling. Quantitative experimental
designs attempt to randomly select participants so that each individual has the equal
probability of being selected from the population, ensuring that the sample will be
representative of the population (Keppel, 1991). In qualitative research, it is important that
participants have direct experience with the phenomena being studied either by observing in
it or participating directly with it and they also must be available and willing to share their
experience.
Specifically with grounded theory, theoretical sampling is used. This type of
sampling begins with data collected through interviews, as with this study, and then
continues based on gathering more information about specific themes and categories.
Interviews are driven by the need to delve further into topics as opposed to meeting a
requirement for a certain number or type of sample. Once the researcher identifies the same
categories and themes occurring consistently across the data collected, the category is
considered saturated. According to Glaser & Strauss, categories are saturated when ―no
additional data are being found whereby the [analyst] can develop the properties of the
category‖ (Glaser & Strauss, 1967, p. 61).
Participants for my study were recruited from the Missouri Partners in Policymaking
program who graduated since the beginning of the program. The Missouri DD Council
reports that 299 participants have graduated from Partners, since 1993. Table 9 provides an
overview of each year of the class participants totaling 186 parents and 113 individuals with
developmental disabilities.
46
Table 9
Participants in the Partners in Policymaking Program in Missouri
Class Year Total Participants Self Advocates Parents
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
Total Participants
26
20
14
24
17
22
20
26
25
23
14
17
25
26
299
8
5
2
5
6
9
11
11
12
13
5
5
9
12
113
18
15
12
19
11
13
9
15
13
10
9
12
16
14
186
To participate in the Partners program, trainees are selected by the Missouri
Developmental Disability Council from a pool of applicants who are a parent of a child with
a developmental disability age eight or younger or who are an adult with a developmental
disability. A developmental disability as defined by the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (P.L. 106-142) is a severe, chronic disability of a
person five years of age or older which:
(A) is attributable to a mental or physical impairment or a combination of mental and
physical impairments;
(B) is manifested before the person attains age 22;
(C) is likely to continue indefinitely;
(D) results in substantial functional limitations in three or more of the following areas
of major life activity:
• self care,
• receptive and expressive language,
• learning,
• mobility,
• self-direction,
• capacity for independent living, and
47
• economic self-sufficiency; and
(E) reflects the person‘s need for a combination and sequence of special,
interdisciplinary, or generic care, treatment or other services which are of lifelong or
extended duration and are individually planned and coordinated; except that such
term when applied to infants and young children means individuals from birth to age
five, inclusive, who have substantial developmental disability or specific congenital
or acquired conditions with a high probability or resulting in developmental
disabilities if services are not provided.
To be considered as a Partners graduate, trainees must attend eight two-day sessions
between the months of February and September and complete homework assignments and a
major project. The Partners program pays for lodging and meals and travel for all
participants. Based on individual needs of the participants, the program can also reimburse
for respite or attendant care. For purposes of this study, participants must have met the
minimal graduation requirements.
Recruitment of Participants
Upon approval from the university‘s institutional review board, I sent an email to the
Coordinator of the Partners in Policymaking program that explained the study and its
purpose. The coordinator then forwarded the email to all parent graduates of Missouri‘s
program. Both the Coordinator and I determined that the use of email was the best process
for recruitment since the main form of communication with Partners graduates is by email. I
also believed that those who would be most willing to share their experience were probably
active in on-going Partners communications, an important factor in qualitative selective
sampling. Interested participants could contact me by phone, email or through a
questionnaire and identify the best location and time for their interview.
I then contacted each interested participant to verify they were parent graduates of the
Partners program, to answer any questions they might have about the study, and to verify
48
time and location for the interview. Twenty-three people contacted me with interest in
participating in the study; however, one was a self-advocate and was therefore not able to be
included in the sample. Based on both availability and saturation levels of the concepts, I
interviewed 14 participants. Participants did not receive any compensation for participating
in the study.
Fourteen parents participated in semi-structured interviews. Demographic
information was gathered during the interview process. Twelve of the study participants
were mothers (86%) and two were fathers (14%.) Participant‘s education ranged from
attending at least one year of college with almost half holding Master level degrees (43%).
Participant‘s children represented varying and multiple cognitive, physical, medical and
chromosomal disabilities such as Autism, Down syndrome, Rett syndrome, Shaken Baby
syndrome and Cerebral Palsy. Three of the study participants (21%) graduated Partners in
Policymaking before 2000 while eleven (79%) graduated in classes from 2001-2010. Table
10 shows the representation of the different graduation classes.
Table 10
Representation of the Study Participants by Graduation Year
Graduation
Year
Number of Study
Participants
1995 1
1999 2
2001 1
2003 2
2005 2
2006 1
2007 2
2008 1
2009 1
2010 1
49
Ethical Considerations
To ensure that the ethical and confidentiality standards were met, my study was
submitted and approved by the UMKC-Social Science Institutional Review Board. All study
participants were provided with a written and verbal explanation of the study along with a
consent form. After verbally reviewing the materials before the interview, verbal consent
was obtained from participants including permission to audiotape interviews. After the
interviews, the audio-tapes were transcribed removing the name of the participant in the
written document to ensure confidentiality. The audio-tapes are stored in a secure, pass code
protected file.
Data Collection
To inductively gain an understanding of the phenomenon studied, it is necessary to
use methods of data generation that are both flexible and sensitive to the social context in
which data are produced (Berg, 1995). To understand the impact of participation in Partners,
I conducted in-depth interviews so parents were able to describe from their perspective how
the training program impacted their lives.
According to Patton (2002), a qualitative interview should be open-ended, neutral,
sensitive, and clear to the interviewee. For my study, a semi-structured interview guide
provided direction to begin the interviews. Questions focused on information about the
graduate, their family and their child with a disability, on their Partners training experience,
and the impact of the training program. Questions were designed to examine the parent‘s
understanding of disability before and after graduation as well as to discuss the
distinguishing features of the program. I used the following questions to guide the
interviews:
50
1. Please tell me about yourself and your family.
2. Tell me specifically about your child with a disability?
3. Tell me how you found out about Partners and why you decided to participate?
4. What do you think has changed since you graduated in Partners?
a. What did you learn?
b. What do you do differently because of what you learned?
c. Have there been changes for your child with a disability? If so, what?
5. Before you graduated from Partners in Policymaking, what were your views of
“disability?”
a. What did you believe life was like for individuals with disabilities?
b. Where did you think individuals with disabilities live, go to school, work and
play?
6. Now that you have graduated, how have your views about disability changed or
stayed the same? How do you think Partners influenced this?
7. Tell me what you liked about Partners?
8. Tell me what would have made your Partners experience better?
All but one interview occurred over the telephone and that one occurred in person at
the office of the interviewee. Prior to starting the interview, I confirmed verbal consent from
the participant for participating in the study and for use of an audio tape recorder. Interviews
lasted from 30 to 120 minutes. Interviews were conducted from July, 2010 to August, 2010.
Interviews were audio taped and transcribed verbatim and then sent to each of the study
participants to check for accuracy of transcription prior to analysis. Four study participants
responded with minor grammatical changes.
Data Analysis
Glaser and Strauss (1967) created a grounded theory framework which utilizes
constant comparisons where the researcher moves back and forth among the data advancing
from coding to conceptual categories and ending with theory development. According to
Corbin and Strauss (1990), coding ―represents the operations by which data are broken down,
conceptualized, and put back together in new ways. It is the central process by which
51
theories are built from data‖ (p. 16). Moving through different stages defined by Strauss and
Corbin (1998), I was able to use data to identify themes (open coding) and then begin to
systematically compare information and form categories (axial coding) which I further
compared and analyzed (selective coding) to move towards the formation of a theory. Table
11 provides a mapping model that illustrates the different stages of analytical process I used
to reach the substantive theory of my study.
Table 11
Analytical Mapping Model for Development of Substantive Theory
Substantive
Theory
Parents “ready” to participate in the Partners in Policymaking program in
Missouri experienced a transformation in their perception about the future for
their child with a disability.
Themes Sense of being “ready” to participate
A training program built on respect
A change in perception about disability
A sense of membership within the disability community
Understanding possibilities
Ability to navigate for a future
Decreased intimidation for advocating
Categories Past Understanding of
Disability
Respect Perception of Disability
Inclusion of Self-
Advocates
Advocating for Child
Needs of Parents Group Learning Dynamics Options and Services
Emotional Impact of
Parenting Child with
Disability
National Speakers Network of Support
Timing of Partners After Partners Activities Legislative and Policy
Activities
Open Codes Based on initial interviews
52
Using the methodology described by Strauss & Corbin (1998), interviews were
analyzed beginning with open coding. Strauss (1987) explains open coding as ―scrutinizing
the field note, interview, or other document very closely; line by line, or even word by word.
The aim is to produce concepts that seem to fit the data (p. 28).‖ Codes were tracked in the
margins of the interview document. During open coding, I identified over 150 conceptual
labels or quotes, as listed in Table 12.
Table 12
Codes Identified During Open Coding Analysis
Open Codes
Ability to let go
Advocate better
Assumptions
Band advocacy together
Being a part of the disability
community
Beyond own child
Camaraderie
Can open closed doors
Change life forever
Child had to be okay left at home
Civic Action after Partners
Commitment of program staff
Commonalities with others
Community involvement
Confidence
Connect to other parents outside
of MO
Decreased isolation
Develop future for child
Don't make assumptions
about self-advocates
Experiential, interactive learning
Eyes and ears for own child
Focus off own child and help
others
Future options for child
Gave parents a different
perspective
Group dynamics
Help to stop thinking of people as
different
Idea for employment options
Information about services and
supports
Information to help let go
Interests
It was time to attend
Jobs
Learn about people with disabilities
Lessened fear of legislator
Lifelong connection
Living in the community
Living options
Made community better
Major change in family
Need to take chance
New view of the world
Not to give up
Others saw people with disabilities in a
different light
Parent expectation of child
with disability
Parent to parent connection
Parent work hard for inclusion
Partner with professionals
Reluctance to attend
Reopen closed doors
Respect
Right time of life
Saw that people with
disabilities dream, live
on their own
See possibilities
Self-advocacy look
beyond stereotypes
Self-advocates as
classmates
Share dreams and fears
with each others
Show how parents need
to let child take risks
Skill set for policy
advocacy
Speakers live the
experience
Stereotype before
partners
Take chances
Tips for inclusion in
schools
Transformation of
husband
Try new things
View of possibilities for
people with disability
Work with school
Want to do more
Widen viewpoint
53
The next step was to group the codes according to conceptual categories referred by
Corbin and Strauss (2008) as axial coding which ―consists of intense analysis done around
one category at a time in terms of the paradigm items‖ (Strauss, 1987: 32). Comparing the
open codes with the interview documents and my field notes and memos, I was able to form
distinct categories. Then the final step in the analysis was selective coding, that is, the
process of refining and grouping categories around a theme (Corbin & Strauss, 1990), which
is described in Table 13. By using memos, I was able to conceptualize the data in narrative
form analyzing and organizing the data to formulate the reality of the participants (Lempert,
2007). Table 13 highlights the open codes into categories
Table 13
Themes Identified During Selective Coding Analysis
Categories Open Coding
Timing Right time of life
Reluctance to attend
Child had to be okay left at home
Internal Changes Take chances
Want to do more
Try new things
Not to give up
Ability to let go
Confidence
New view of the world
Information and Tools Future options for child
Tips for inclusion in schools
Idea for employment options
Living options
Information about services and supports
Self-advocates Stereotypes
Assumptions
Interests
54
Categories Open Coding
Show how parents need to let child take risks
Gave parents a different perspective
View of possibilities for people with disability
Help to stop thinking of people as different
Saw that people with dream, live on their own
Advocacy skills Partner with professionals
Advocate better
Reopen closed doors
Band together with others to make change
Lessened fear with legislators
Civic Action after Partners
Focus off own child and help others
Skill set for policy advocacy
Aspects of Partners Self-advocates as classmates
Speakers live the experience
Camaraderie
Being a part of the disability community
Share dreams and fears with each others
Respect
Commitment of program staff
Group dynamics
Experiential, interactive learning
Decreased isolation
Assessing the quality and rigor of qualitative research has been debated by many
from within and outside the field of qualitative methods. Early standards were defined using
the quantitative criteria of internal validity, external validity, reliability, and objectivity.
However, these standards could not be addressed in naturalistic research. As a result many
different researchers and theoreticians recast the four criteria to meet varying needs that exist
(Lincoln, 2001). According to Creswell & Miller (2000), terms abound in the qualitative
literature that addresses different criteria such as trustworthiness, authenticity and credibility.
Other terms have also been used such as rigor, quality, transparency and integrity. The lack
of agreement or terms is due in part to the fact that ―there is not one single way to analyze
55
qualitative data—it is an eclectic process in which you try to make sense of the information.
Thus, the approaches to data analysis espoused by qualitative writers will vary considerably
(Creswell, 2002, p. 258).‖
My study utilized the broad categories of qualitative reliability and qualitative
validity as defined by Creswell (2009) to assess the trustworthiness and dependability of the
data and the overall findings. Gibbs (2007) defines qualitative reliability as the use of an
approach consistently across different researchers and different projects. Grounded theory,
by nature, provides a systematic approach that provides the researcher with a constant
comparison method for analysis which is a recognized approach in the field.
To further enhance the reliability of the study, several strategies of transparency were
used throughout the collection, analysis and reporting stages. Transparency allows the reader
to assess the intellectual strengths and weaknesses of the researcher (Soklaridis, 2009). This
is accomplished by maintaining and documenting careful records of what occurred at each
stage of data collection and analysis. After the interviews were transcribed, completed
transcriptions were sent to each of the study participants for review. This enabled the
participant to change or clarify any portion of the interview. In addition, field notes and
memos were kept throughout the process to guide and check for assumptions during all
phases of the research. This was further enhanced by presenting a code map that enables the
reader to see the different stages of comparison and how the theory emerged from the
different codes and categories. This criteria of disclosing methods and detailing the research
adds to the credibility of the research and to quantitative methods in general (Anfara, Brown
& Mangione, 2002)
56
Creswell (2009) also provides a definition and recommendations for achieving
qualitative validity in a study. He believes a researcher is able to achieve qualitative validity
by using one or more of 8 defined strategies to check for accuracy of the findings; (1)
triangulation, (2) member checking of findings, (3) using thick description to convey
findings, (4) clarifying the bias of the researcher, (5) presenting negative information that
runs counter to themes, (6) spending prolonged time in the field, (7) using peer debriefing to
enhance accuracy of information and (8) using an external auditor.
Following Creswell‘s recommendations, I used several validity strategies to ensure
accuracy of this study. The first strategy was triangulation which brings together different
but complementary data to support a claim. Triangulation was achieved in this study by
comparing memos and findings to the results with past studies and evaluation reports from
around the country. Data was further triangulated with my personal and professional
experience. Secondly, participants reviewed their transcripts as well as the results for
accuracy and for reflection on the identified categories and theme. Four participants returned
transcripts with minimal grammar changes and three participants provided feedback on the
results section. The third strategy was the utilization of thick descriptions in the results
section provided by participants that conveys their understanding of participation. This was
captured by italicizing for the reader the direct phrases from participants.
In addition, I identified and clarified my personal bias and experiences to increase the
readers understanding of my position as the researcher. I believe that my prolonged
involvement with the Partners in Policymaking program and its participants added greater
knowledge beyond the data collected during interviews. My experience of living as a family
57
member of a person with a disability as well as working as a professional in the field of
disability also added to validation of results.
To further validate the results, several professionals in the disability field reviewed
the findings. Specifically, the past and current program coordinators for the Missouri Partners
in Policymaking program, a Partner in Policymaking graduate who did not participate in the
study and a current participant in the program reviewed and responded on the results section.
In addition, two coordinators from other states were debriefed to ensure for accuracy. Table
14 highlights the strategies I used to ensure accuracy of the data.
Table 14
Strategies for Checking Accuracy of Findings (Creswell, 2009)
Recommended Strategy Strategy Applied to Study
Triangulation Compare findings with past studies and
evaluation reports
Member checking Transcripts sent to participants for editing and
feedback of results
Thick description Description and quotes in results section
Clarifying bias Provided in methods
Presenting Negative information that runs
counter to themes
Provided in results
Spending prolonged time in the field Sibling and professional in field
Peer debriefing to enhance accuracy Shared with current and past coordinator and
other states
External auditor Results reviewed by Partners participants not
interviewed
58
CHAPTER 5
RESULTS
The Partners in Policymaking Program, for many of the parent participants, was a
life-changing experience; it was monumental, it was a shift in my mindset and it forever
changed and molded who I am. One parent compared it to the first time they saw the ocean,
you hear people talk about it but until you go, you just cannot take it all in and grasp the
gravity of the opportunity. Another parent explained how it truly has taken my child and his
life and his potential and just expanded it. For some parents it was not until several months
after graduating that they were fully aware of the impact or importance of what they
experienced.
This chapter describes the key elements of this life-changing transformation for
Partners in Policymaking parent graduates within seven themes: being ready, feeling
respected, changing perceptions, finding membership, understanding possibilities,
navigating a future, and decreasing intimidations. Within the themes, direct quotes from
parents are italicized.
Being Ready
Many parents used the phrase “being ready” when talking about considering and
applying for Partners. Although the experience of being ready was different, it was a very
concrete and vivid experience for each. One parent was ready to apply for Partners after she
was able to transition from denial and grieving to realizing (her child) was a beautiful
person, not something to be fixed. For another parent being ready meant moving beyond
living day to day to now thinking about the future and where (their child) would end up.
Another parent was ready when she couldn‘t ignore the constant grumbling in her heart that
59
something wasn’t right about her child being segregated in a special education classroom.
Two other parents described their experiences of how they were ready after they witnessed
the metamorphosis of attitude and change of belief systems about individuals with disabilities
from other parents who had attended. The sense of being ready appears to be an important
factor in why and when someone applies to the program and possibly how much the program
affected them.
Feeling Respected
Many parents explained their experience as a parent of a child with a disability as
entering a whole different world or different ball game. For some parents, the experience of
parenting was stressful and overwhelming because of the ongoing challenges at every stage
of the game with a kid with a disability. One parent explained that family members and
people in the community treat you as if you are crazy for fighting for inclusion of your child
with a disability into their school. For others, caregiving was not what was stressful it was
the challenge of getting what your child needed from professionals and the disability system.
The Partners in Policymaking program is one of the first times for many parents,
since becoming a parent of a child with a disability, where “respect” served as the
foundation for the program and many of their interactions. One parent commented that the
respect that we received was amazing; I was treated like a businessperson. I had never
received that type of respect as a mother, let alone a mother of a person with a disability.
Parents conveyed how respectful and committed the program staff was in hosting the
program, as well as all of the presenters. It was an environment for participants to be able to
learn and grow but they did not baby people and they do not feel sorry for you.
60
Parents felt the program design and schedule was very respectful of their time and
other commitments. From the travel arrangements to the resource papers, the training was
always well organized and you knew what to expect so it was worth the trip. This is
especially important to parents who often feel like they are constantly struggling or battling
to get what their child needs and that professionals do not understand or respect where they
are coming from as a parent.
Changing Perceptions
Many parents recognized that although they had a child with a disability, they had
thought very little, beyond their own child, about individuals with disabilities and their lives
before participating in Partners in Policymaking. Parents admitted individuals with
disabilities were absent from (their) view, they were a mystery or that they had looked right
through them. For some parents, they didn’t even give it a thought. One parent explained
that disability wasn’t even on my radar screen, probably like the rest of the general
public…..and then I had my child. For most of the parents, having a child with a disability
introduced them to a world they were completely unaware of.
Many parents thought back to their childhood and recalled how uncommon it was to
see a peer with a disability in their schools. Several parents remembered busing the children
to a different school or one parent referred to the mystery hallway as the place where children
with disabilities attended. One parent said I have to say I honestly was scared if I did see
someone out in the community with a disability. I was scared of them and just felt I wouldn’t
be able to talk with them. Another parent regrettably admitted that they saw right past them
like they were not human and they did not have an opinion.
61
Several parents‘ recall having a negative perception about the life individuals with
disabilities lead; they really did not have a quality of life or that they were not doing
anything, they were just cared for. Parents admitted that they were unsure what individuals
with disabilities did or how they were supported; one had the notion that all individuals with
disabilities live in institutions, for another employment in the community wasn’t even a
possibility. One parent explained before Partners, I didn’t give it a whole lot of thought
about independence and about living life to its fullest. For parents who had experience with
disability, Partners validated or reaffirmed their assumptions, beliefs and views about
disability.
Partners in Policymaking exposed parents to the current and past realities of
disability. Starting in the first weekend with an overview of the history of disability and the
presentation titled ―Disability is Natural‖ and throughout the entire program with interaction
and inclusion of individuals with disabilities as classmates was the cause for their
transformation. This shift seemed immediate for some parents and for others it wasn‘t until
after Partners, the more it made sense. Many parents felt after the first session their whole
mind shifted. One parent explained how she came home after the first session and apologized
to her son for all of the stuff that she had put him through; it was the first time that she began
thinking about how the different therapies and interventions had the potential to cause her
son pain and isolation.
For many parents, it was their first exposure to the history of disability. For some,
this emotional experience provided the history and explanation for institutions and sheltered
workshops and the great leaps and strides from what it was 10, 20 years ago. For others,
this session brought guilt, sadness and tears. One parent explained how I have cried hard
62
lots of times obviously but watching the videos and learning about the history made me cry.
Another parent expressed how she wept and wept because she could not believe that people
with disabilities experience such cruelty.
Having self-advocates as classmates provided parents with a glimpse into the life of
an adult with disability. For one parent it was nice to be able to hear what their experiences
were and how they managed their own lives and the supports that they had to do it. It was
the up-close and personal exposure to day-to-day life such as communication or ways of
walking or using wheel chairs. One parent explained that if individuals with disabilities were
not included as equal peers, they would not have believed it as much because it was all
theoretical to me without self-advocates sitting in the room with me, learning with me.
This inclusive dynamic allowed parents to talk, interact and communicate with self-
advocates, many for the first time. Parents were also able to watch and observe how their
experience has shaped them and things that they have gone through in their life that brought
them there. For other parents, self-advocates provided encouragement and hope. It put things
into perspective in terms of what the future might look like for their child. It helped them
realize that (their child) is going to be an adult someday and that it is okay.
Many parents felt like their perspective of the strengths and opportunities for
individuals with disabilities was the biggest change. One parent was able to see beyond the
disability and see how capable individuals with disabilities are. It just really opened my eyes
to what their lives were like. A number of parents mentioned that it was the first time that
they realized individuals with disabilities dream. For other parents, they recognized that
individuals with disabilities are able to communicate their wants and needs; that they are
gifted and capable and they want to be a part of the community.
63
Parents articulated how this changed perception carried over to their view about their
own child. One parent said that what changed for them was that it let me look at my daughter
and realize it is not just pity; it is not self-doubt or inability. It was almost entirely the
opposite. It was hoping, dreaming, loving, liking and disliking just like everybody else does.
For other parents, it opened their eyes to the reality that their child had potential and that they
were going to grow up as an adult with rights. One parent explained that it’s really
horrifying to me to think had I not had Partners in my life, my child would really be so
limited.
Learning alongside self-advocates as they talked about their experiences was a major
factor for creating this new perspective. Parents were able to see beyond their role of
nurturing and protection to seeing the importance of their child taking risks, making mistakes
and sometimes failing. One parent recognized by listening to a self-advocate‘s story that
Mom and Dad have to let go at some point and allow stuff to happen. By including self-
advocates as classmates, parents were able to see that individuals with disabilities are out
there trying to have a sense of independence and have their own life.
Finding Membership
The feeling of isolation of being a parent of a child with a disability was an
overwhelming emotion of many of the parents. The feeling of isolation came from the
feeling that you feel like you are the only one out there that has a child with a disability.
These feelings, for some occurred immediately after their child was born; after a typical baby
is born, people give advice but after your baby is born with a disability, they do not know
what to say. For others, it occurred when advocating or standing up for your child as they
interact with different settings and people. The explanation provided by one parent was
64
through the comparison with the segregation of how children feel when isolated in special
education resource rooms; just be a parent with a child with a disability, it is almost equally
isolating.
The experiential group learning process was an important feature of the Partners
program both in terms of individual learning but also in connecting the group to one another.
One parent explained that there were 30 other people that were getting to know each other,
sharing stories, and discussing strategies for moving forward, not just for their own loved
one but for other people in the state as well. Parents felt that having other parents and self-
advocates in the group created a safe environment for learning, brainstorming and developing
skills. Parents felt like they could share their dreams and nightmares with each other. One
parent explained you didn’t feel alone and you didn’t feel like you were crazy. When you
cried it was okay because they understood why you cried. You were with a group of people
that understood. For many of the parents, Partners provided them for the first time with a
connection or network to other parents or self-advocates in the same situation.
The feeling of connecting with others who are experiencing similar situations is
reinforced with speakers that were parents of children with disabilities; they were living it,
not people that were just out talking about it. Another parent explained it as:
When someone who feels so strongly about something gets up and speaks, it’s real
easy to listen to that. It’s real easy to go with that person and to listen to what their
life experience or dreams were and their efforts that they made along the way to make
those dreams real.
Partners not only connected with each other during class, it also opened up a network
for connection after the class. The listserv and the alumni training serve as a support system
for sharing concerns, ideas or telling success stories. For some parents it created new
65
lifelong friends and for others it was a safety net if they needed some assistance. One parent
explained there’s virtually no network in the school district between parents with disabilities
and I don’t depend on Partners daily, I just know they’re there and I know that they’ll
understand. However, a few of the parents interviewed do not stay in touch with other
Partners, nor participate in the listserv or attend the alumni training because they did not feel
that doing so would meet their on-going needs specific to their families.
Understanding Possibilities
For most of the parents, they expressed the desire to increase their knowledge to know
as much about everything that they could. Parents wanted information about their child‘s
specific diagnosis or disability and about the different types of services available locally and
statewide. They lacked information about what was possible or available for their child.
Parents wanted information that would help them look at the future and learn about what to
expect.
Parents appreciated the speakers who are recognized experts in the field and who are
very knowledgeable and passionate about the information that they provide. The speakers
provided resources beyond the typical written resources and provided information about how
they did things and how they went about it. Parents felt that they could apply this directly to
their lives and use it in a real way. Specifically parents liked receiving tools related to
advocating during an individual education plan (IEP) meeting and legislatively.
Partners provided parents with information about different options and types of
services available locally and statewide, along with strategies for navigating those services.
Partners created a picture for your child’s future. It helped many parents know what to
expect and demand at school and it provided options about life after school. For some
66
parents, this information expanded their understanding not only about what is available but
also provided information beyond the segregated settings that were familiar. One parent
explained:
when you don’t know what’s out there, your options are very limited, but when you
hear what people are doing in other areas and how they went about it and how you
can do it, I think that that just helps you grow and helps your child.
Navigating a Future
Parents‘ also expressed immense confusion and frustration with the new role of
navigating and interacting with different systems such as the medical, educational or
disability service systems to get what they needed for their child. For some parents, it was
the lack of respect from professionals and for others the political dimensions and policies that
made it difficult to get the services they needed. For one parent, when they attended an
individual education planning meeting they felt like the professionals were talking a different
language and following a different set of rules. Advocating for even basic things that most
people take for granted was something that most parents are now facing.
Parents felt they needed training to assist them in advocating for their own child by
having a basis of knowledge to react to or to cooperate with the people that are trying to help
him. They expressed the need to learn strategies that would assist them in discussions with
the doctors, educators and other professionals. Parents wanted to learn strategies that assist
them to gain the respect and attention of professionals. Parents wanted professionals to
understand that they know the child best and that they were advocating for what was best for
their child and family.
Partners provided parents with specific tools and skills for advocating for their child.
It gave me the skills and helped me be prepared. It provided strategies for communicating
67
and speaking up on behalf of their child. Parents learned what was appropriate and how far
to push it. It built parents courage so that they could say my child has rights. One parent felt
that without Partners, I would not have learned to speak up and to expect to be heard.
In subsequent meetings after the training, parents felt that they were more prepared to
bring people to collaborate on meeting the needs of their child. The training provided a basis
of knowledge to react to or to cooperate with the people that are trying to help. Partners
provided an understanding of the special education laws and rights of the child and parents
along with a structure for advocating within the law. Parents knew what was possible and
they felt armed, that they did not have to settle when they attended their individual education
planning meetings.
Decreasing Intimidations
Some parents had a desire to become more knowledgeable about how to advocate at
the policy and systems level, both locally and statewide for all individuals with disabilities.
By attending Partners, parents felt that they not only could learn new advocacy skills but they
would be exposed to opportunities for using those skills. Several parents recognized the need
to make a difference not only for their own child but for other kids and families. One
participant explained that not all parents are strong enough to advocate, they do not
necessarily have the ability or the drive to always stand up for their child so I find myself
fighting for all of them.
Several parents also expressed how the advocacy they learned for their own child also
had an impact on other children and their community. Partners provided encouragement and
tools to reach out beyond their own families and advocate for change within their schools and
68
other services in the community. By learning how to challenge and improve things for their
own child, they were also setting the tone for the next kids coming up the block.
Parents felt Partners provided them with an understanding of the legislative process at
the local, state and national levels such as how a bill becomes law and specific strategies for
influencing the process. This information increased parents‘ assertiveness and confidence
and made the process of advocating for policy change less intimidating. Parents are now
more comfortable writing letters, making calls, or visiting with legislators. By
understanding the political dynamics, parents feel they were able to focus their efforts to
make a bigger impact in legislative advocacy. One parent explained that it does not matter
how passionate you are or even how much information you have if you do not approach it in
the right way.
Parents provided examples of how they became involved in systems activities as a
direct result of their participation in Partners. One parent worked in their local county to
establish a tax levy that would support funding for individuals with disabilities and their
families. Another parent talked about their role with the parent teacher advisory board as a
member and as an officer while another parent explained her positions on the state, regional
and national board for Head Start. Several parents serve as peer mentors for other parents
providing emotional and informational support. Almost all of the parents interviewed
discussed how Partners had opened different opportunities for creating change beyond their
own family.
The listserv and the alumni training also keep parents motivated and knowledgeable
about current issues. The listserv also served as a tool for mobilizing advocacy efforts. One
parent gave the example of emailing an issue they were having with their child that could
69
potentially impact other children in the same situation and several Partners graduates
participated in the letter writing campaign.
Summary
The design of the Partners in Policymaking program made life-changing
transformation possible for parent graduates. The themes of readiness, respect, changed
perceptions, newfound membership, possibilities, skills for navigating a future, and
decreased intimidation for advocacy are central to these changes. Partners in Policymaking
exposed parents to information and experiences that transformed their assumptions and
stereotypes about individuals with disabilities into a positive realization that individuals with
disabilities can lead fulfilling and productive lives.
70
CHAPTER 6
CONCLUSION
Discussion
Parents and families of children with disabilities have become increasingly involved
in developing programs and policy related to disability services over the past half century.
Training programs have been created to foster the knowledge and skills necessary for parents
and families to advocate for their child and to participate in the larger political process. One
of these programs, Partners in Policymaking, was conceived in 1996 to mobilize parents of
children with developmental disabilities and adults with disabilities to participate in policies
which support inclusion, independence, integration, self-determination, and productivity of
individuals with developmental disabilities as set forth in the federal Developmental
Disabilities Act.
The present research focuses on parents who participated in the Partners in
Policymaking program hosted in Missouri over the past sixteen years. Fourteen parents
participated in semi-structured interviews until reaching saturation of themes. Using
grounded theory this study delves into the specific impact of the Partners program on the
participants and how features of the program impact the outcomes. The result of this study is
a substantive theory that concludes that parents “ready” to participate in the Partners in
Policymaking program in Missouri experience a transformation in their perception about the
future for their child with a disability.
This substantive theory builds on previous positive research findings from the
Partners in Policymaking program by describing the meaning of participation from the
perspective of the parents. These studies recognize graduates satisfaction with the program
71
and demonstrate that participation enhances self-advocacy skills, knowledge of and ability to
obtain services, and ability to contact policy offices (Wieck & Skarnulis, 1987; Zirpoli,
Hancox, Wieck, & Skarnulis, 1989; Zirpoli, Wieck, Hancox, & Skarnulis, 1994; Conconan-
Lahr & Brotherson, M.J., 1996; Balcazar et al., 1996).
The Partners in Policymaking program, by design, provides concrete information and
skills about the disability field, however this study identifies that it also provides much more
than that. It changes parents‘ perception of individuals with disabilities and ultimately their
own perception of their child‘s possibilities. It provides membership into community that
helps to increase their confidence in parenting, navigating and advocating for what they
believe and want. Moreover, it ultimately gives parents a sense of hope, opportunity to
dream and ability to create a vision for the future. This transformation is possible because
parents come ―ready‖ to hear about a new reality and because the Partners in Policymaking
program created a respectful and inclusive environment that allows for growth and change.
This study also supports the need to implement the program with very specific
features, as set forth by its founders of the Partners in Policymaking program. Built upon the
principles of respect and dignity, programs must include experiential learning, national
speakers, self-advocates, and diversity if they are to replicate it (Barenok & Wieck, 1998).
From the perspective of the participants, these features served as the causal agent of their
transformation.
Conclusions and Recommendations
The Partners in Policymaking program transforms parent‘s old stereotypes and
assumptions about individuals with disabilities to a more positive and hopeful perspective for
the future of their child. Families‘ need opportunities, such as Partners in Policymaking, to
72
connect to a larger support network that includes self-advocates and other families in order to
discover and try new things. Information and skills are important; however, it is important to
have a network of people to practice with, fail in front of and have as a support system in
order for families to discover different options and ideas that challenge the historical societal
perception of individuals with disabilities.
Future training programs for parents of children with developmental disabilities
should provide exposure and interactions with individuals with developmental disabilities.
Parents can receive information on the types of services and supports that are available
however having contact with individuals with disabilities will help them to successfully
envision and apply the knowledge they received. Training programs should ensure
individuals with developmental disabilities are in vital roles with key responsibilities in all
facets of the program as classmates, trainers, and facilitators. This requires a commitment of
programs to move beyond inclusion as a token or mandate, to inclusion as an equal
professional.
Parents‘ undergo many stages of coping, adaptation, adjustment and pride throughout
their life as it relates to raising a child with a disability. It is also important to present
information to parents at a point when they are ready to accept the message or understand the
need for the skill acquisition. Parents must interact with supports that offer a sense of hope
and offer a glimpse of what the future might look like; through personal communication with
other families or self-advocates, reading personal stories or viewing positive reflections of
success in pictures or videos. Parents and family members must also serve in vital roles with
key responsibilities. By including staff and volunteers who have lived experience, they will
be able to adapt the information and relate to others in a family-centered manner.
73
This study highlights the importance of building parent training program on the tenets
of respect, inclusion, empowerment, and participatory learning. By incorporating these
aspects, parents are able to obtain the information and skills to make changes for their child
and family and undergo the positive emotional changes to the assumptions they may be
carrying about individuals with disabilities. Parents that participate in programs built on the
key features identified in this study will have a greater sense of hope and a more positive
vision for the future of their child with a developmental disability.
Limitations and Future Research
Several limitations are recognized in this study. Use of qualitative research design
and specifically grounded theory significantly limits the ability to make broader
generalizations due to the use of a purposeful sample instead of a random sample group.
However, the purpose of this study was exploratory and attempted to move beyond
evaluating the measured effectiveness of the program. Grounded theory was purposefully
chosen to seek a deeper understanding of the impact of participating in Partners in
Policymaking and to understand the features of the program that had the greatest impact.
Interviews were conducted with key informants not with the purpose of quantifying and
generalizing outcomes to all participants but rather to seek a symbolic, descriptive
explanation of what is occurring from each individual‘s perspective.
The sample size of this study was limited in both number and characteristics of the
subjects chosen. Factors such as time availability of the researcher and prospective subjects
as well as financial and logistical constraints further limited the subject pool. Using
grounded theory, these factors were minimized with the use of theoretical and purposeful
74
sampling instead of random selection from a population and the methodology of saturation of
themes.
The sample was limited because only parents of children with disabilities were
selected and other participants in the Partners in Policymaking program were excluded. The
decision to include only parent participants was intentional since parents of children with
disabilities represent a specific target audience with unique demographics, needs,
experiences, and understanding. Because individuals with developmental disabilities provide
a distinct perspective it is important to separate their voices from other participants
Despite its limitations, this study has important implications for programs that
provide information and training to families of children with disabilities. This study also
provides greater depth into understanding the positive outcomes associated with graduating
from Partners in Policymaking and for understanding the needs of parents of children with
developmental disabilities.
Future studies should seek to understand what facilitates the concept of ―readiness‖
for families to receive the information and how being ready for different types of information
and interactions could influence the intensity and type of transformation that occurs for
training participants. Other areas of future research should focus on understanding how
historical perceptions and stereotypes of disability impacts the types of services and supports
families access for their child with a disability. Future research must include the perspective
of all family members, self-advocates, parents, sibling and others who identify as a family
member.
Future studies should utilize advocacy and pragmatic worldviews of research which
recognize the nature of reality as being multiple and political (Crotty, 1998). It is important
75
that any research in this field is directly applicable to current policies and practices and
includes individuals with developmental disabilities and their families as researchers in the
development, design, analysis and dissemination. It is crucial that emancipatory and
empowerment-based research methods, such as mixed methods, are employed in future
disability studies in order to stop the negative perpetuation of stereotypes of individuals with
developmental disabilities. In research, methodology, results and dissemination must serve
as a means for creating equal, barrier free societies for all people.
76
REFERENCES
Affleck, G., Tennen, H., & Gershman, K. (1985). Cognitive adaptations to high-risk infants: The
search for mastery, meaning, and protection from harm. American Journal of Mental
Deficiency, 89(6): 653-656.
Agosta, J. (1992). Evaluating family support services. Two quantitative case studies. Monographs
of the American Association of Mental Retardation, 18: 167-174.
Anfara, V. A., Brown, K. M., & Mangione, T. (2002). Qualitative analysis on stage: Making the
research process more public. Educational Researcher, 31(7), 28-36. doi:
10.3102/0013189X031007028
Antonovsky, A. (1993). The implications of salutogenesis: An outsider‘s view. In A. Turnbull, J.
Patterson, S. Behr, D. Murphy, J. Marquis, & M. Blue-Banning (Eds.), Cognitive coping,
families, and disability (pp. 111-122). Baltimore: Paul H. Brookes.
Bailey, D.B. (2001). Evaluating parent involvement and family support in early intervention and
preschool programs. Journals of Early Intervention, 24(1): 1-14. doi:
10.1177/105381510102400101
Bailey, D.B., Blasco, P.M., & Simeonsson, R.J. (1992). Needs expressed by mothers and fathers of
young children with disabilities. American Journal on Mental Retardation, 97(1): 1-10.
Bailey, D.B., McWilliam, R.A., Darkes, L.A., Hebbeler, K., Simeonsson, R.J., Spiker, D., &
Wagner, M. (1998). Family outcomes in early intervention: A framework for program
evaluation and efficacy research. Exceptional Children, 64(3), 313-328.
Bailey, D.B., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M.E., Rodriguez, P., ..... Skinner, M.
(1999). Needs and supports reported by Latino families of young children with
developmental disabilities. American Journal on Mental Retardation, 104(5): 437-451.
Balcazar, F.E., Garate-Serafini, T., & Keys, C.B. (1999). A road map for success: Setting goals and
recruiting mentors. Chicago: University of Illinois at Chicago, Department of Disability and
Human Development.
Balcazar, F.E., Keys, C.B., Bertram, J.F., & Rizzo, T. (1996). Advocate development in the field of
developmental disabilities: A data based conceptual model. Mental Retardation, 34(6): 341-
351.
Barenok, T., & Wieck, C. (1998). Partners in Policymaking: Far more than the object of policy. In
Ward, L. (ed.) Innovations on advocacy and empowerment for people with intellectual
disabilities. Chorley: Lisieux Hall Publications.
77
Barlow, J., Coren, E., & Stewart-Brown, S. (2002) Meta-analysis of the effectiveness of parenting.
British Journal of General Practice, 52(476):223-233.
Bazyk, S. (1989). Changes in attitudes and beliefs regarding parent participation and home
programs: An update. American Journal of Occupational Therapy, 43(11): 723-728.
Beach Center on Disability (2007a). After a complex history, family support stands at the
crossroads. Lawrence: The Beach Center on Families and Disability, The University of
Kansas.
Beach Center on Disability (2007b). Definition of Family Support. Lawrence: The Beach Center on
Families and Disability, The University of Kansas.
Beckman, P.J. (1991). Comparison of mothers‘ and fathers‘ perceptions of the effect of young
children with and without disabilities. American Journal on Mental Retardation, 95(5): 585-
595.
Begun, A.L. (1996). Family systems and family-centered care. In Rosen, P., Whitehead, A.D.,
Tuchman, L.I., Jesien, G.S., Begun, A.L., & Irwin, L. (Eds.), Partnerships in family-centred
care. A gude to collaborative early intervention (pp. 33-63). Baltimore: Paul H. Brookes
Berg, B. (1995). Qualitative research methods for the social sciences. Needham Heights, MA:
Allyn & Bacon.
Bitsika, V., & Sharpely, C. (2000). Development and testing of the effects of support groups on the
wellbeing of parents of children with autism- II: Specific stress management techniques.
Journal of Applied Health Behavior, 2(1): 8-15.
Blacher, J., Lopez, S., Shapiro, J., & Fusco, J. (1997). Contributions to depression in Latina mothers
with and without children with retardation. Family Relations, 46(4): 325-334.
Blumer, H. (1969). Symbolic interactionism: Perspective and Method. Englewood Cliffs, NJ:
Prentice-Hall.
Bonfenbrenner, U. (1979). The Ecology of Human Development, Cambridge, MA: Harvard
University Press.
Bowman, D., & Virtue, M. (1993). Public policy, private lives. Canberra: Australian Institute on
Intellectual Disability.
Braddock, D. (2002). The state of the states: Public policy toward disability at the dawn of the 21st
century. Washington, DC: American Association on Mental Retardation.
78
Bradley, V.J. (1992). Monographs of the American Association on Mental Retardation Chapter 6:
Conclusions and Implications. In Knoll, J., Supporting families: State family support efforts
(pp. 167-174). Washington, DC: The Association.
Brewer, E., McPherson, M., Magrab, P., & Hutchins, V. (1989). Family-centered, community-based,
coordinated care for children with special health care needs. Pediatrics, 83(6): 1055-1060.
Bristol, M.M., Gallagher, J.J., & Holt, K.D., (1993). Maternal depressive symptoms in autism:
Response to psychoeducational intervention. Rehabilitation Psychology, 38(1): 3-10.
Brookman-Frazee, L. (2004). Using parent/clinician partnerships in parent education programs for
children with autism. Journal of Positive Behavior Interventions, 6(4): 195-213.
Bryant, A., & Charmaz, K. (2007). The SAGE handbook of grounded theory. London: SAGE.
Caldwell, J., Heller, T., & Taylor, S.J. (2007). Longitudinal outcomes of a consumer-directed
program supporting adults with developmental disabilities and their families. Intellectual and
Developmental Disabilities, 45(3): 161-173. doi: 10.1352/1934-
9556(2007)45[161:LOOACP]2.0.CO;2
Charmaz, K. (2006). Constructing grounded theory. Thousand Oaks, CA: SAGE.
Charmaz, K., & Henwood, K. (2007). Grounded theory in psychology. In Willig, C. & Stainton-
Rogers, W. (Eds.) Handbook of qualitative research in psychology (pp. 240-260). London:
SAGE.
Cho, S., Singer, G.H.S., & Brenner, M. (2001). Adaptation and accommodation to young children
with disabilities: A comparison of Korean and Korean-American families. Topics in Early
Childhood Special Education, 20(4): 236-249. doi: 10.1177/027112140002000404
Conconan-Lahr, R., & Brotherson, M.J. (1996). Advocacy in disability policy: Parents and
consumers as advocates. Mental Retardation, 34(6): 6:352-358.
Corbin, J., & Strauss, A. (1990). Basics of qualitative research. Newbury Park, CA: SAGE.
Corbin, J., & Strauss, A. (2008). Basics of qualitative research (3rd
ed.). Thousand Oaks, CA:
SAGE.
Costigan, C.L., Floyd, F.J., Harter, K.S.M., & McClintock, J.C. (1997). Family process and
adaptation to children with mental retardation: Disruption and resilience in family problem-
solving interactions. Journal of Family Psychology, 11(4): 515-529.
Cournoyer, D.E. (1991). Measuring parents' perceptions of mental health professionals. Research on
Social Work Practice, 1(4): 399-415. doi: 10.1177/104973159100100405
79
Creswell, J.W. (1998). Qualitative inquiry and research design: Choosing among five traditions.
Thousand Oaks, CA: SAGE.
Creswell, J.W. (2002) Educational research: Planning, conducting and evaluating quantitative and
qualitative research. Upper Saddle River, NJ: Merrill Prentice Hall.
Creswell, J. (2009). Research design: Qualitative, quantitative, and mixed methods approaches (3rd
ed.). Thousand Oaks, CA: SAGE.
Creswell, J., & Miller, D. (2000). Determining validity in qualitative inquiry. Theory into Practice,
39(3), 124-130.
Crnic, K.A., Friedrich, W.N., & Greenberg, M.T. (1983). Adaptation of families with mentally
retarded children: A model of stress, coping, and family ecology. American Journal of
Mental Deficiency, 88(2): 125-138.
Crotty, M.(1998). The foundations of social research: Meaning and perspective in the research
process. London: SAGE.
Daniels, S., Butz, B., Goodman, N., & Kregel, J. (2009). Rising expectations: The DD Act revisited –
Draft.
Davidson, B., & Dosser, D.A., (1982). A support system for families of with developmentally
disabled infants. Family Relations, 31(2): 295-299.
Dempsey, I.. & Dunst, C.J. (2004). Helpgiving styles and parent empowerment in families with a
young child with a disability. Journal of Intellectual & Developmental Disabilities, 29(1):
40-51. doi: 10.1080/13668250410001662874
Denzin, N. K., & Lincoln, Y. S. (2003). Introduction: The discipline and practice of qualitative
research. In Denzin, N.K., & Lincoln, Y. S. (Eds.), Collecting and interpreting qualitative
materials (2nd
ed. pp. 1-46). Thousand Oaks, CA: SAGE.
Developmental Disabilities Assistance and Bill of Rights Act of 2000. Public Law 106-402 U.S
Code 42 2000 § 15001.
Dunst, C.J., Johanson, C., Trivette, C.M., & Hamby, D. (1991). Family-oriented early intervention
policies and practices: family-centered or not?. Exceptional Children, 58(2):115-126.
Dunst, C.J., Trivette, C.M., & Deal, A.G. (1988). Enabling and empowering families: Principles and
guidelines for practice. Cambridge, MA: Brookline.
Dunst, C.J., Trivette, C.M., & Deal, A.G. (1994). Enabling and empowering families. In Dunst, C.J.,
Trivette, C.M, & Deal, A.G. (Eds.), Supporting & strengthening families vol.1: Methods,
strategies and practices (pp. 2-11). Cambridge, MA: Brookline.
80
Dyson, L. (1991). Families of young children with handicaps: Parental stress and family functioning.
American Journal on Mental Retardation, 95(6): 623-629.
Emerson, E., (2003). Mothers of children and adolescents with intellectual disability: Social and
economic situation, mental health status, and the self-assessed social and psychological
impact of the child‘s difficulties. Journal of Intellectual Disability Research, 47(4-5): 385-
399. doi: 10.1046/j.1365-2788.2003.00498.x
Emerson, E. (2007). Poverty and people with intellectual disabilities. Mental Retardation and
Developmental Disabilities Research Reviews, 13(2): 107-113.
Erickson, M. & Upshur, C. (1989). Caretaking burden and social support: Comparisons of mothers
of infants with and without disabilities. American Journal on Mental Retardation, 94(3):
250-258.
Everson, J.M., & Zhang, D. (2000). Person-centered planning: Characteristics, inhibitors, and
supports. Education and Training in Mental Retardation and Developmental Disabilities,
35(1): 36-43.
Feldman, M.A. & Werner, S. E. (2002). Collateral effects of behavioral parent training on families
of children with developmental disabilities and behavior disorders. Behavioral Interventions
17(2):75-83. doi: 10.1002/bin.111
Ferguson, P.M. (2002). A place in the family: An historical interpretaton of research on parental
reactions to having a child with a disability. The Journal of Special Education, 36(3), 124-
131. doi: 10.1177/00224669020360030201
Finlay, L. (2002) ‗Negotiating the swamp: The opportunity and challenge of reflexivity in research
practice‘. Qualitative Research, 2(2): 209–30.
Floyd, F.J. & Gallagher, E.M. (1997). Parent stress, care demands, and use of support services for
school aged children with disabilities and behavior problems. Family Relations, 46(4): 359-
371.
Fougeyrollas, P. & Beauregard, L. (2001). Disability: An interactive person-environment social
creation. In Albrecht, G. L., Seelman, K.D., & Bury, M. (Eds.) Handbook of disability
studies (pp. 171-194). Thousand Oaks: SAGE.
Freedman, R. I,. & Boyer, N.C. (2000). The power to choose: Supports for families caring for
individuals with developmental disabilities. Health & Social Work, 25(1): 59-68.
Freedman, R.I., Kraus, M.W., & Seltzer, M.M. (1997). Aging parents‘ residential plans for adult
children with mental retardation. Mental Retardation, 35(2): 114-123. doi: 10.1352/0047-
6765(1997)035<0114:APRPFA>2.0.CO;2
81
Frey, K.S., Greenberg, M.T., & Fewell, R.R. (1989). Stress and coping among parents of
handicapped children: A multidimensional approach. American Journal on Mental
Retardation, 94(3): 240-249.
Friedrich, W.N., & Friedrich, W.L. (1981). Psychosocial assets of parents of handicapped and
nonhandicapped children. American Journal of Mental Deficiency, 85(5): 551-553.
Friesen, B.J., & Koroloff, N.M. (1990). Family-centered services: Implications for mental health
administration and research. Journal of Mental Health Administration, 17(1): 13-25. doi:
10.1007/BF02518576
Fujiura, G.T. (1998). Demography of family households. American Journal on Mental Retardation,
103(3): 225-235.
Fujiura, G.T., & Yamaki, K. (2000). Trends in demography of childhood poverty and disability.
Exceptional Children, 66(2): 187-199.
Gallimore, R., Coots, J., Weisner, T., Garnier, H., & Guthrie, D. (1996). Family responses to
children with early developmental delays II: Accommodation intensity and activity in early
and middle childhood. American Journal of Mental Retardation, 101(3): 215-232.
Gallimore, R., Weisner, T., Bernheimer, L., Guthrie, D., & Nihira, K. (1993). Family responses to
young children with developmental delays: Accommodation activity in ecological and
cultural context. American Journal on Mental Retardation, 98(2): 185-206.
Gartner, A., Kerzner-Lipsky, D., & Turnbull, A. P. (1991). Supporting families with a child with a
disability. Baltimore, MD: Brookes.
Gibbs, G. (2007). Analyzing qualitative data. In Creswell, J. (2009). Research design: qualitative,
quantitative, and mixed methods approaches (3rd ed. p. 190). Thousand Oaks, California:
SAGE.
Glaser, B., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative
research. Chicago: Aldine.
Glidden, L.M. (1989). Parents for children, children for parents: The adoption alternative.
Washington, DC: American Association on Mental Retardation.
Goode, D. (1999). History of the Association for the Help of Retarded Children of New York City.
New York: AHRC.
Guba, E. G., & Lincoln, Y.S. (1989) Fourth generation evaluation. Thousand Oaks, CA: SAGE
82
Greenberg, J.S., Seltzer, M.M., Krauss, M.W., & Kim, H. (1997). The differential effects of social
supports on the well-being of aging mothers of adults with mental illness or mental
retardation. Family Relations, 46(4): 383-394.
Harris, V.S., & McHale, S.M. (1989). Family life problems, daily caregiving activities, and the
psychological well-being of mothers of mentally retarded children. American Journal on
Mental Retardation, 94(3): 231-239.
Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an
intellectual disability: the effects of parental cognitions in relation to child characteristics and
family support. Journal of Intellectual Disability Research, 49(6): 405-418. doi:
10.1111/j.1365-2788.2005.00673.x
Heflinger, C.A., Bickman, L., Northrup, D., & Sonnichsen, S. (1997). A theory-driven intervention
and evaluation to explore family caregiver empowerment. Journal of Emotional and
Behavioral Disorders, 5(3): 184-191. doi: 10.1177/106342669700500306
Heller, T., Caldwell, J., & Factor, A. (2007). Aging family caregivers: Policies & Practices. Mental
Retardation and Developmental Disabilities Research Reviews, 13(2): 136-142. doi
10.1002/mrdd
Heller, T., Miller, A., & Factor, A. (2003). Adults with mental retardation as supporters to their
parents: effects on parental caregiving appraisal. In Balcher, J. & Baker, B. (Eds.), The best
of AAMR journal articles across the twentieth century (pp. 215-223). Washington, DC:
American Association of Mental Retardation.
Heller, T., Miller, A.B., & Hsieh, K. (1999). Impact of a consumer-directed family support program
on adults with developmental disabilities and their family caregivers. Family Relations,
48(4): 419-427.
Hess, R.E., Clapper, C.R., Hoekstra, K., & Gibison, F.P. (2001). Empowerment effects of teaching
leadership skills. Psychiatric Rehabilitation Journal, 24(3): 257-265.
Hooper, S. R. & Umansky, W. (2004). Young children with special needs. Upper Saddle River NJ:
Merrill Prentice Hall.
Horwitz, A., Reinhard, S., & Howell-White, S. (1996). Caregiving as reciprocal exchange in
families of seriously mentally ill members. Journal of Health and Social Behavior, 37(2):
149-162.
Hutchins, V.L. & McPherson, M. (1991). National agenda for children with special health needs:
Social policy for the 1990s through the 21st century. American Psychologist, 46(2): 141-143.
83
Ireys, H.T., Chernoff, R., DeVet, K.A., & Young, K. (2001). Maternal outcomes of a randomized
controlled trial of a community-based support program for families of children with chronic
illnesses. Arch Pediatric and Adolescent Medicine, 155(7): 771-777.
Itzhaky, H., & Schwartz, C. (2000). Empowerment of parents of children with disabilities: The
effect of community and personal variables. Journal of Family Social Work, 5(1): 21-36.
doi: 10.1300/J039v05n01_03
Jacques, R. (2003). Family issues. Psychiatry, 2(9): 39-41.
Johnson, B.H., McGonigel, M.J., & Kaufmann, R.K. (1989). Guidelines and recommended practices
for the Individualized Family Service Plan. Chapel Hill, NC: NEC TAS.
Johnstone, D. (1998) An introduction to disability studies (London, David Fulton).
Jones, T.M., Garlow, J.E., Turnbull, H.R., & Barber, P. A. (1996). Family empowerment in a family
support program. In Singer, G.H.S., Powers, L.E., & Olson, A.L. (Eds.), Redefining family
support: Innovations in public-private partnerships (pp. 87-114). Baltimore: Paul H.
Brookes Publishing.
Kagan, S.L., & Weissbourd, B. (1994). Putting families first: America’s family support movement
and the challenge of change (pp.xi-xix). San Francisco, CA: Jossey-Bass Publishers.
Kaliszewski, R., & Wieck, C. (1987). Application for partners in policymaking, year two. St. Paul:
Minnesota Council in Developmental Disabilities.
Kate Toms and Associates (1997). Evaluation of the partners in policymaking training project from
1990-1996. New York State: New York State Developmental Disability Planning Council.
Kazak, A. E. (1992). Stress, change, and families: Theoretical and methodological considerations.
Journal of Family Psychology, 6(2): 120-124. doi: 10.1037/0893-3200.6.2.120
Kazak, A.E., & Marvin, R.S. (1984). Differences, difficulties, and adaptation: Stress and social
networks in families with a handicapped child. Family Relations, 33(1): 67-77.
Keppel, G. (1991). Design and analysis: A researcher’s handbook (3rd
Ed). Englewood Cliffs, NJ:
Prentice Hall.
King, S., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered service for children with
cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology,
11(1): 78-86. doi: 10.1016/j.spen.2004.01.009.
Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J., & Blaney, B. (1992). Supporting families:
State family support efforts. In Bradley, V., Knoll, J., Agosta, J. (Eds), Emerging issues in
family support (pp. 57-98). Washington DC: AAMR.
84
Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J., & Blaney, B. (1990). Family support
services in the United States: An end of decade status report. Cambridge, MA: Human
Services Research Institute.
Knox, M., Parmenter, T.R., Atkinson, N. & Yazbeck, M. (2000). Family control: The views of
families who have a child with an intellectual disability. Journal of Applied Research in
Intellectual Disabilities, 13(1):17-28.
Koegel, R.L., Symon, J.B., & Koegel, L.K. (2002). Parent education for families of children with
autism living in geographically distant areas. Journal of Positive Behavior Interventions,
4(2): 88-103. doi: 10.1177/109830070200400204
Koren P,E., DeChillo, N., & Friesen, B.J., (1992). Measuring Empowerment in families whose
children have emotional disabilities: a brief questionnaire. Rehabilitation Psychology, 37(4):
305-321. doi: 10.1037/h0079106
Larimore, W.L. (1993). Family-centered birthing: A niche for family physicians. American Family
Physician, 47(6):1365-1366.
Larson, S. A., Lakin, K. C., Anderson, L., Kwak, N., Lee, J. H., & Anderson, D. (2000). Prevalence
of mental retardation and/or developmental disabilities: Analysis of the 1994/1995 NHIS-D.
MR/DD Data Brief, 2:1-11.
Lefley, H.P. (1996). Family caregiving in mental illness. Thousand Oaks, CA: SAGE
Lempert, L. (2007). Asking questions of the data: Memo writing in the grounded theory tradition. In
Bryant, A. & Charmaz, K. (Eds.), The SAGE handbook of grounded theory (pp. 245-264).
Los Angeles: SAGE.
Lincoln, Y. (2001). Varieties of validity: Quality in quantitative research. In Smart, J., & Tierney,
W. (Eds.), Higher education: Handbook of theory and research (pp. 25-72). New York:
Agathon Press.
Mahoney, G., Kaiser, A., Girolametto, L., MacDonald, J., Robinson, C., Safford, P., & Spiker, D.
(1999). Parent education in early intervention: A call for renewed focus. Topics in Early
Childhood Special Education, 19(3): 131-140. doi: 10.1177/027112149901900301
Mahoney, G., & O‘Sullivan, P. (1992). The family environments of children with disabilities:
Diverse but not so different. Topics in Early Childhood Special Education, 12(3): 386-402.
Mak, W.S., & Ho, S.M. (2007). Caregiving perceptions of Chinese mothers of children with
intellectual disability in Hong Kong. Journal of Applied Research in Intellectual
Disabilities, 20(2): 145-156. doi: 10.1111/j.1468-3148.2006.00309.x
85
Marks, N.F. (1997). Does it hurt to care? Caregiving, work-family conflict and mid-life well-being.
Journal of Marriage and the Family, 60(4): 951-966.
Mary, N.L. (1998). Social work and the support model of services for people with developmental
disabilities. Journal of Social Work Education, 34(2): 247-260.
Maul, C.A. & Singer, G.H.S. (2009) ―Just good different things‖ specific accommodations families
make to positively adapt to their children with developmental disabilities. Topics in Early
Childhood Special Education. 29(3): 155-170. doi: 10.1177/0271121408328516
McCollum, J.A., & Hemmeter, M.L. (1997). Parent-child interaction when children have
disabilities. In Guralnick, M. (Ed.), The effectiveness of early intervention (pp. 549-578).
Baltimore, M.D.: Paul H. Brookes Publishing Co.
McCubbin, M., & McCubbin, H. (1989). Theoretical orientations to family stress and coping. In
Figley, C. R. (Ed.), Treating stress in families (pp. 3–43). New York: Brunner/Mazel.
McDowell, M. & Klepper, K. (2000). A ―chronic disorder‖ health care model for children with
complex developmental disorders. Journal of Pediatrics and Child Health, 36(6):563-568.
doi: 10.1046/j.1440-1754.2000.00564.x
Mitchell, D. & Winslade, J. (1997). Developmental systems and narrative approaches to working
with families of persons with disabilities. In Brown, R. (Ed.), Quality of life for people with
disabilities. Models, research and practice (2nd
ed., pp. 151-82). Stanley Thorpe:
Cheltenham.
Neely-Barnes, S, Graff, C.J., Marcenko, M., Weber, L., & Warfield, M.E. (2008). Family decision
making: Benefits to persons with developmental disabilities and their family members.
Intellectual and Developmental Disabilities, 46(2): 93-105. doi: 10.1352/0047-
6765(2008)46[93:FDMBTP]2.0.CO;2
O‘Brien, C.L., O‘Brien, J., & Mount. B. (1997). Person-centered planning has arrived…or has it?
Mental Retardation, 35(6): 480-483. doi: 10.1352/0047-
6765(1997)035<0480:PPHAOH>2.0.CO;2
Oliver, M. (1990). The politics of disablement. Basingstoke, UK: MacMillan.
Parish, S.L., Pomeranz-Essley, A.P. & Braddock, D. (2003). Family support in the United States:
Financing trends and emerging initiatives. Mental Retardation, 41(3): 174-187. doi:
10.1352/0047-6765(2003)41<174:FSITUS>2.0.CO;2
Parish, S., Pomeranz-Essley, A., Hemp, R., Rizzolo, M.C., & Braddock, D. (2001). Family support
for families of persons with developmental disabilities in the US: Status and trends. Policy
research brief: The college of education and human development. Minneapolis, MN:
University of Minnesota Press.
86
Parish, S.L., Rose, R.A., Andrews, M., Grinstein-Weiss, M., Richman, E.L., & Dababnah, S. (2009).
Material hardship in US families raising children with disabilities: Research summary &
policy implications. UNC School of Social Work.
Patterson, J.M., (2002). Integrating family resilience and family stress theory. Journal of Marriage
and Family, 64(2): 349-360. doi: 10.1111/j.1741-3737.2002.00349.x
Patton, M. Q. (2002). Qualitative research and evaluation methods. London: SAGE.
Pearlin. L.I. (1989). The sociological study of stress. Journal of Health and Social Behavior, 30(3):
241-256.
Plummer, K. (2000). Symbolic interactionism in the twentieth century. In Turner, B.S. (ed.), The
blackwell companion to social theory (pp. 193-222). Malden, MA: Wiley-Blackwell.
Pruchno, R.A., Patrick, J.H., & Burant, C. (1996). Aging women and their children with chronic
disabilities: Perceptions of sibling involvement and effects on well-being. Family Relations,
45(3): 318-326.
Ramey, S.L., Krauss, M.W., & Simeonsson, R.J. (1989) Research on Families: Current assessment
and future opportunities. American Journal of Mental Retardation, 94(3): ii-vi.
Risdal, D., & Singer, G.H.S. (2004). Marital adjustment in parents of children with disabilities: A
historical review and meta-analysis. Research and Practice for Persons with Severe
Disabilities, 29(2): 95-103. doi: 10.2511/rpsd.29.2.95
Santelli, B., & Marquis, J. (1993). Parent to parent programs: Ongoing support for parents of
young adults with special needs. Journal of Vocational Rehabilitation, 3(2): 25-37.
Santelli, B., Poyadue, F.S., & Young, J.L., (2001). The parent to parent handbook: Connecting
families of children with special needs. Baltimore: Paul H. Brookes.
Santelli, B., Turnbull, A., Marquis, J., & Lerner, E. (1997). Parent to parent programs: A resource
for parents and professionals. Journal of Early Intervention, 21(1): 73-83. doi:
10.1177/105381519702100108
Scheerenberger, R.C. (1987). A History of Mental Retardation: a Quarter Century of Promise.
Brookes, Baltimore.
Schultz, C. L., Schultz, N.C., Bruce, E.J., Smyrnios, K.X., Carey, L.B., & Carey, C.L (1993).
Psychoeducational supports for parents of children with intellectual disability: An outcome
study. International Journal of Disability, Development and Education, 40(3):205-216.
87
Schwartz, C., & Gidron, R., (2002). Parent of mentally ill adult children living at home: Rewards of
caregiving. Health and Social Work, 27(2): 145-154.
Seltzer, M.M., Greenberg, J.S., Floyd, F.J., Pettee, Y., & Hong, J. (2001). Life course impacts of
parenting a child with a disability. American Journal on Mental Retardation, 106(3): 265-
286.
Seltzer, M.M., Greenberg, J.S., & Krauss, M.W. (1995). A comparison of coping strategies of aging
mothers of adults with mental illness or mental retardation. Psychology and Aging, 10(1):
64-75. doi: 10.1037/0882-7974.10.1.64
Shakespeare, T. (1997) Rules of engagement: changing disability research. In: Barton, L. & Oliver,
M. (Eds.) Disability studies: Past present and future (pp. 248-253). Leeds: Disability Press.
Shelton, T. L., Jeppson, E. S., & Johnson, B. (1987). Family-centered care for children with special
health care needs. Washington, DC: Association for the Care of Children's Health.
Silverstein, R. (2000). Emerging disability policy framework: A guidepost for analyzing public
policy. Iowa Law Review, 85(5):1691–1806.
Singer, G.H.S. (2002). Suggestions for a pragmatic program of research on families and disability.
The Journal of Special Education, 36(3): 148-154.
Singer, G., & Irvin, L. (1989). Family care giving, stress and support. In Singer, G. & Irvin, L.
(Eds.), Support for care-giving families: Enabling positive adaptation to disability (pp. 3-26).
Baltimore: Brooks.
Singer, G.H.S., Marquis, J., Powers, L.K., Blanchard, L., Divenere, N., Santelli, B..... Sharp, M.
(1999). A multi-site evaluation of parent to parent programs for parents of children with
disabilities. Journal of Early Intervention, 22(3): 217-229. doi:
10.1177/105381519902200305
Sofronoff, K., & Farbotko, M. (2002). The effectiveness of parent management training to increase
self-efficacy in parents of children with Aspergers syndrome. Autism : the International
Journal of Research and Practice, 6(3): 271-286. doi: 10.1177/1362361302006003005
Soklaridis, S. (2009). The process of conducting qualitative grounded theory research for a doctoral
thesis: Experiences and reflections. The Qualitative Report, 14(4): 719-734.
Strauss, A. (1987). Qualitative analysis for social scientists. Cambridge: Cambridge University
Press.
Strauss, A., & Corbin, J. (1994). Grounded theory methodology: An overview. In Denzin, N.K.
(Ed.). Handbook of qualitative research (273-285). London: SAGE.
88
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for
developing grounded theory, (2nd
ed.). Thousand Oaks, CA: SAGE.
Summers, J.A., Behr, S.K., and Turnbull, A.P. (1989). Positive adaptation and coping strengths of
families who have children with disabilities. In Singer, G.H.S., & Irvin, L.K. (Eds.), Support
for caregiving families: Enabling positive adaptation to disability (pp. 27-40). Baltimore:
Paul H. Brookes.
Summers, J.A., McMann, O.T., & Fuger, K.L. (1997). Critical thinking: A method to guide staff in
serving families with multiple challenges. Topics in Early Childhood Special Education,
17(1): 27-53.
Summers, J.A., Poston, D.J., Turnbull, A.P., Marquis, J., Hoffman, L. Mannan, H., & Wang, M.
(2005) Conceptualizing and measuring family quality of life. Journal of Intellectual
Disability Research, 49(10): 777-783. doi: 10.1111/j.1365-2788.2005.00751.x
Systemwide Solutions, Inc. (2004) An evaluation of the South Carolina partners in policymaking
program. Columbia, SC: South Carolina Developmental Disabilities Council.
Taylor, S. J., Knoll, J. A., Lehr, S., Walker, P. M. (1989). Families for all children: Value-based
services for children with disabilities and their families. In Singer, G.H.S., & Irvin, L.K.
(Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 41-
54). Baltimore: Paul H. Brookes.
Thompson, L., Lobb, C., Elling, R., Herman, S. Jurkiewicz, T., & Hulleza, C. (1997). Pathways to
family empowerment: Effects of family-centered deliver of early intervention services.
Exceptional Children, 64(1): 99-113.
Thoits, P.A. (1995). Stress, coping, and social support process: Where are we? What next?. Journal
of Health and Social Behavior, 35: 53-79.
Turnbull, A.P., Blue-Banning, M., Turbiville, V., & Park, J. (1999). From parent education to
partnership education: A call for transformed focus. Topics in Early Childhood Special
Education, 19(3): 164-172. doi: 10.1177/027112149901900308
Turnbull, A.P., Patterson, J.M., Behr, S., Murphy, D.L., Marquis, J.G., & Blue-Banning, M.J.
(1993). Cognitive coping, families, and disability. Baltimore: Brookes.
Turnbull, A.P., Summers, J.A., & Brotherson, M.J. (1983). Working with families with disabled
members: A family systems perspective. Lawrence: University of Kansas, Research and
Training Center on Independent Living
Turnbull, A.P. & Turnbull, H.R. (1990) Families, Professionals, and Exceptionality: A Special
Partnership (2nd
ed.). Columbus, OH: Merrill.
89
Turnbull, A.P., & Turnbull, H..R. (1996). Group action planning as a strategy for providing
comprehensive family support. In Koegel, L., Koegel, R., & Dunlap, G. (Eds.), Community,
school, family, and social inclusion through positive behavioral support (pp. 99-114).
Baltimore: Paul H. Brookes.
Turnbull, A.P. & Turnbull, H.R., (2001). Families, professionals, and exceptionality: Collaborating
for empowerment. (4th
ed.). Upper Saddle River, NJ: Merrill Publishing Co.
Turnbull A.P., Turnbull H.R., Erwin E.J., Soodak L.C. (2006). Families, professionals and
exceptionality. (5th
ed.) Upper Saddle River, NJ: Merrill/Prentice Hall.
Turnbull, H.R. & Turnbull, A.P. (2000). Family support: Retrospective and prospective. In
Wehmeyer, M.L. & Patton, J.R. (Eds.), Mental Retardation in the 21st Century (pp. 3-17).
Austin, TX: Pro-Ed.
Turnbull, H.R., Turnbull, A.P., & Wheat, M. (1982). Assumptions concerning parent involvement:
A legislative history. Exceptional Education Quarterly, 3(2): 1-8
U.S. Senate Report 100-113 (1987). Developmental Disabilities Assistance and Bill of Rights Act
Amendments. U.S. 100th
Congress, 2nd
Session.
Wang, M., Mannan H., Poston, D. Turnbull, A.P., & Summers, J.A. (2004). Parents‘ perceptions of
advocacy activities and their impact on family quality of life. Research & Practice for
Persons with Severe Disabilities, 29(2), 144-155. doi: 10.2511/rpsd.29.2.144
Wehmeyer, M.L. (1992). Self-determination and the education of students with mental retardation.
Education and Training in Mental Retardation, 27(4): 302-311.
Wehmeyer, M.L., & Palmer, S. (2000). Promoting the acquisition and development of self-
determination in young children with disabilities. Early Education and Development, 11(4),
465-481.
Weiss, H. (1989). State family support and education programs. American Journal of
Orthopsychiatry, 59(1): 32-48. doi: 10.1111/j.1939-0025.1989.tb01633.x
Weissbourd, B. (1987). A brief history of family support programs. In Kagan, S. L., Powell, D. R.,
Weissbourd, B., & Zigler, E. (Eds.), America's family support programs (pp. 38-56). New
Haven: Yale University Press.
Weissbourd, M.S., & Kagan, S.L. (1989). Family support programs: Catalysts for change. American
Journal of Orthopsychiatry, 59(1): 20-31 doi: 10.1111/j.1939-0025.1989.tb01632.x
Westling, D.L. (1996). What do parents of children with moderate and severe mental disabilities
want?. Education and Training in Mental Retardation, 31(2): 86-114.
90
Wheeler, J.J. (1996) The use of interactive focus groups to aid in identification of perceived service
and support delivery needs of persons with developmental disabilities and their families.
Education and Training in Mental Retardation and Developmental Disabilities 31(4): 294-
303.
Wieck, C. & Skarnulis, E. (1987). Partners in policymaking: Year one. Minneapolis: Minnesota
Governor‘s Planning Council on Developmental Disabilities.
Zigler, E. & Black, K.B. (1989). America‘s family support movement: Strengths and limitations.
American Journal of Orthopsychiatry, 59(1): 6-19. doi: 10.1111/j.1939-0025.1989.tb01631.x
Ziripoli, T.J., Hancox, D., Wieck, C. & Skarnulis, E.R. (1989). Partners in Policymaking:
Empowering People. The Journal of Association for Persons with Severe Handicaps, 14(2):
163-167.
Ziripoli, T. J., Wieck, C., Hancox, D., & Skarnulis, E.R. (1994). Partners in Policymaking: The first
five years. Mental Retardation, 32(6): 422-425.
91
VITA
Michelle Christine Reynolds (Sheli) was born on October 24, 1973. Her elementary
education was in the local public school district of Francis Howell School located in St.
Charles, MO. She graduated from high school from St. Joseph‘s Academy in Frontenac,
MO. in 1992. She attended Meramec Community College on an academic and athletic
scholarship and later transferred to Rockhurst University to complete her Bachelor of Arts
degree in 1996 and continue her athletic career. She continued her higher education
experience at Rockhurst University where she completed her Masters in Occupational
Therapy in 1999.
In 1997, while attending Rockhurst University, she began her career as a research
assistant at the University of Missouri-Kansas City, Institute for Human Development
working in the disability field. Since 2001, she has served there in the role as Director of
Individual Advocacy and Family Support. She began her work toward her Interdisciplinary
Ph.D. in Public Administration and Sociology at the University of Missouri-Kansas City in
the Fall of 2001. Upon completion of her degree requirements, Ms. Reynolds plans to
continue her career in the developmental disability field and to pursue her research interests
focusing on families and individuals with developmental disabilities.